Getty Owl Foundation

Support and Love

From Kate:

It is clear that Mark and I would not be being so well if we did not have the support and love of family, friends, and the unbelievable kindness of strangers. It is clear that Team Getty is not just her doctors. Team Getty encompasses anyone who has said a prayer, anyone who has asked what can I do to help, anyone who has checked out her website and after reading the posts has decided to make some kind of change in their own life, all of our loved one’s that are actively planning fundraisers for our little owl, and our loving family that are always on our mind and we know if you could be here you would in a heartbeat.

Getty has brought so many people together. We feel such an incredible sense of community. We feel as though all who read are a part of our family now. You have met us, you have met the love of our lives, and I have a feeling you understand why the sun rises and sets in her eyes. She is such a inspirational human being. We are lucky to be her parents. We thank every day that she chose us to be her mommy and daddy.

Mark and I got to meet an amazing family today in a phone call all the way from New York. Catherine and Vincent, thank you so much for your time and love. We look forward to more conversations. You both are so gracious and your daughter Sophia is such an inspiration.You helped us put this in perspective in regards to SMA and the research that is out there. We are so hopeful.

To my special friends at school who are not only working full-time, but also feverishly planning several fundraisers for Miss Getty. Ladies, what I can say, except for thank you and you are all so special to our family.

To my friend Stacey who has worked so hard to plan her own fundraisers and this website  for Getty and who is also a full-time mother with one of Getty’s boyfriends, Leyton, thank you.

To my friend Takoa, I am so glad we reconnected. And to the whole clan from DC. Your unconditional love and comfort has allowed me to just breathe. I thank you for your grace and constant care.

To our parents who have supported us in all kinds of ways, we can only imagine how hard it is to see you own children going through this challenge as well as know that your grandchild’s health could be compromised. Know that we have each other for comfort. Know that you all paved the way for us to be strong for our Getty. You all have in your own way have prepared us as parents. We love you and we thank you.

Life is truly what you make of it. I am learning that we really do all we can to control our destinies, but at the end of the day, seems like that is just wishful thinking. I used to take great pride in controlling everything. Now, I am realizing that to control is futile. To love is far more gratifying and sustaining.

You have all become part of our family, you are all a part of Team Getty. We welcome you and our only request is that you hug your kids closer and you love those around you.

Love and Support

We wanted to make sure we posted all of the wonderful comments from Caringbridge.com. Thank you for all the love and support for our little girl. Each comment was read and each comment has helped us move forward with life. Each comment has warmed our heart and each comment has let us know that we are not doing this alone. We thank you.

• Thursday, September 9, 2010 3:33 PM, EDT

beautiful little owl – i wish your parents all the love, strength and peace i can from the east coast.  i only know your dad from the straight dope, but boy does he love you!  you are such a special little girl, and you are in my prayers.
elizabeth
llcoolbj77

elizabeth lancaster

• Sunday, September 5, 2010 4:32 PM, CDT

Dear Mark and the two we haven’t had the pleasure to meet– Kate & Getty,

Mark, you know how the family grapevine works: your mom, updates my mom, and then Beth and I finally hear the details.  What can I say that hasn’t already been said?  We have been heartbroken since we first heard the news as you are truly dealing with the hardest thing a parent must ever endure!  We wish you both the strength and the ability to enjoy the time you’re blessed to have with Getty.  You are all in our thoughts and prayers.

Love,
Jennifer (Nepper), Torsten, & Fiona Fiebig

Jennifer Fiebig

• Saturday, September 4, 2010 10:40 PM, PDT

Dear Mark and Kate,
You are a very special couple with a very special child.  She is truly beautiful!
Your journal is so touching.  Not only do we feel your pain, but we feel the love you have for Getty and for each other.   I am in awe of your strength in dealing with such a heart breaking diagnosis and your ability to reach out for support and to be a support. You are truly an inspiration!
Mark we consider you and your family a part of our family.  We are there for you!
With love,
Jan Nepper

Alice Nepper

• Friday, September 3, 2010 10:21 PM, PDT

Storm Family.
I love you guys and I am praying that the burdens of stress from your jobs would be lifted off your shoulders.

Keep going strong, and know that it’s ok to have a moment of weakness.  We have your backs if you need anything.

Love,
Morgan

Morgan Saunders

• Friday, September 3, 2010 7:52 PM, PDT

LOVE the owl hat, photo is so cute. Great news about the barium swallow….the results, not the test! Good luck having a few days of naps and cuddles.
Gail

Gail Blais
gailanne2@msn.com

• Thursday, September 2, 2010 9:35 PM, PDT

Just wanted to say I love you again. 🙂
I LOVE YOU!
I am so glad that you had a wonderful weekend.

Goodnight Little Owl. Dream lots.

Love always,
Anastasia L.

Anastasia Liebler

• Monday, August 30, 2010 5:36 PM, CDT

Tx, Kate, for letting us hear your side of the fun weekend in Oakland. Chris sent us photos and what a cutie that smiley little girl of yours is. Auntie Krista looks superbly happy with Getty on her lap.
Once more, Getty has shown lots of people how important the right now is and importance of good memories to last forever. There’s always a lump in my throat when I see pictures of her and a warm smile that goes deep into my heart.
Love, Susan, Krista’s mom.

susan gulbransen
smiles@earthling.net

• Friday, August 27, 2010 4:41 PM, PDT

Getty, thank you for sharing your Sunday with Madyson, Charley, Takoa, your mommy and your Grammy and me!  The 2 Grammys had some special moments with you and Charley.  We had a chance to cry a little but had a bigger time with laughing at you 2.  You do love the trees.  Now you have a star to call your own too!

Kathy Raney

Kathy Raney

• Friday, August 27, 2010 10:45 AM, PDT

I love the photo from 8/25 entry…..sticking out her tongue at you….it’s hilarious and just so sweet!

Sarah Ellis

• Friday, August 27, 2010 7:36 AM, PDT

Hi Kate & Mark,
I just thought I would drop you a little note….I had never heard of Caring Bridge before, even in working in the healthcare industry for almost 10years. I am with mixed emotions of knowing about it now becuase of the situation that you are going through.
I got a call yesterday from a friend of mine in a hospice ompany that had a friend of a friend (if you can follow) call her to ask some questions for help they needed.
I had not shared your story with her but she thought of me to call right away, as she knows that I am a passionate patient advocate.
The friend of a friend saw an email on Caring Bridge….well that was all I needed to hear, I stopped her from explaining anymore and said whatever they need, I will find.
I could go further into their story but I won’t at this time.
So, thank you for sharing your story and sharing Caring Bridge with us all. I am now on a mission to spread the word for Getty and all the others out there that need to know about CaringBridge.
Love – Chevas

Chevas Rainer

• Thursday, August 26, 2010 11:26 PM, PDT

I am glad that you get that time! It must be vary special. I love you all and miss you dearly. Just cant wait to see that little glowing face again! I put her pcture on my desktop so I can get a little smile and a flash of storm sized strangth when ever I open my computer. It is nice to see her every day. It reminds me that this world is a better place and to take advantage for every second. To say I love you too much and smile asthough every ounce of happyness is bursting through.

Goodnight little Owl and little owl family. I love you and think of you every day…

With all of my love,
Anastasia L.

Anastasia Liebler
aliebler@beca-aba.com

• Thursday, August 26, 2010 11:10 PM, MDT

We start and end everyday praying and hoping for a miracle. The journal gives us the opportunity to feel part of the joys and suffering. Thank you for sharing this precious life with us.
Love to ALL

GB and NB
(Mark’s Cousin in Calgary)

Garth & Norma Blais
gjbisvader@hotmail.com

• Thursday, August 26, 2010 5:42 PM, PDT

Hi Kate:

I am friends with Becky (Powers) and I think we’ve met once or twice over the years. Beck told me about Getty’s diagnosis and I have been following your blog every day since. I just wanted to tell you how sorry I am and that I am praying for you and your family.

I cannot imagine what you and Mark are going through, but am truly amazed by your courage and strength. You are both such an inspiration. Thank you for being so open in sharing this journey with all of us. Getty is such a beautiful little girl! Every time you post pictures and I see her smiling face it brightens my day!

Thinking of you. Sending lots of love and prayers.
Monica Conniff

Monica Conniff

• Thursday, August 26, 2010 1:06 PM, PDT

What a beautiful, happy, little lady you have there!
Every picture that you post of Getty she looks like a beam of sunshine, and that is because she was given a great mom and dad whom love her so very much.

I have been following your journal and keeping all of
you in my daily thoughts and prayers. Please give Getty lots of
kisses from us!!  We love you!

Love, Michelle

Michelle Stump

• Thursday, August 26, 2010 7:30 AM, PDT

Don’t forget to include yourself in the line of strong women she gets her strength from Kate, you are one of the strongest women I have ever known.
Love – Chev

Chevas Rainer

• Thursday, August 26, 2010 1:52 AM, CDT

Happy 5 month Birthday Getty!! It is so fun to see her adorable personality evolve through the pictures and the amazing daily entries you share with us in this blog!! What a joy she must bring to you both!!

Xoxo

Kerri Willis

• Wednesday, August 25, 2010 6:19 PM, PDT

Dear Getty,
What a great smile you have darling girl, thinking of you and your mommy and daddy.

Hugs,

Kathy Berkowitz

• Tuesday, August 24, 2010 4:08 PM, PDT

Hi Kate,

I hope you had a wonderful first day back to school – I am sure your kids enjoyed seeing you after their  summer break.   Give Getty a hug for me – she sounds like a very happy baby!  Leslie

Leslie Stumpf

• Tuesday, August 24, 2010 8:42 AM, PDT

Dear Kate,

I realize that you are living in a dimension that is impossible for most of us to conceive, yet I deeply identify with you and am so happy that so many people are by your side.  I am hoping that the writing of your journal soothes your soul to some degree.  You are such a descriptive writer.  As I follow your journey, I too can see Cooper running in the park and can hear soft sound of the wind chimes and little Getty Girl singing along with the Beatles in the back seat.  Thanks again for sharing.

I am sending positive thoughts to you and all who are a part of your life.

barbara prowen

• Tuesday, August 24, 2010 8:13 AM, PDT

Mathany,
Good luck at work today!  I’m sure it will be hard but it sounds like you have a wonderful “family” and support team at school.
Powers

Becky McKee

• Monday, August 23, 2010 9:09 PM, PDT

Hi Kate,
I can’t remember the last time I spoke to you, it’s been ages. Becky told me about Getty and I can’t stop thinking about you and your family. I pray for her every night and I pray for strength for you and your family. I will continue to pray that God Blesses your precious little girl, thinking of you, Nikki Sullivan

Nikki Sullivan

• Monday, August 23, 2010 8:18 PM, PDT

Thinking of you & Getty……all my love to you.
Love Chevas

Chevas Rainer

• Sunday, August 22, 2010 10:32 PM, PDT

Oh my gosh, I just love the singing baby!  All you need is love!

Diane Wesley

• Monday, August 23, 2010 12:22 AM, EDT

Thank you for sharing all your moments of joy with Getty. Those moments are like soothing balm for those among us, and there are many, who have been following your story of pain, grief, and love. Love is the only thing that matters on this earth anyway, and we don’t often stop and realize it.

Hugs to Owl and her parents. Keep singing, little girl!

Margaret Buckley

• Sunday, August 22, 2010 8:12 PM, PDT

Thank you so much for giving us your morning!

Takoa Stathem

• Sunday, August 22, 2010 7:39 PM, PDT

Kate…..
What can I say …. I understand.
I want you to know I am here for you….
Anytime … For anything.
One step… One day at a time…
Appreciating the Blessing
In each and every moment
With your beautiful Getty…
That’s what you have.
Love …. Hugs …. Prayers

Linda Berry
lindaberry1028@yahoo.com

• Saturday, August 21, 2010 11:24 PM, PDT

Hi Kate,  Happy Saturday and Happy Sunday, tomorrow!

Diane Wesley

• Saturday, August 21, 2010 5:09 PM, PDT

WOW KATE  – What a powerful message you delivered!  I started out crying with you from the beginning and felt like I was walking with you every step of the way…..and as you went thru each  door that in the past were so familiar – now they hold something different because your lives have changed so much in such a short amount of time!  The students who really do love “Mathany”, the teacher, who really has given them something special that will go with them after high school….the other members of the staff that have become “family” in every meaning of the word and along with some of the things you were dreading the most, another door opened that showed YOU how much YOU mean to those around YOU!    Kate, you and Mark have such special qualities about you – that it’s almost sad that we can’t bottle them and share with others!

Getty~Girl – you are an amazing gift that has captured the hearts of all of us who have had the joy of holding, kissing and “talking” to you.  Now that circle around you is growing so big and very strong because of all the new people who want to join in because Mommy & Daddy have shared daily their feelings and information about you!  We are so very lucky to have this incredible “United Storm Family” to be our leaders…..we have joined the “Getty’s Little Owl Team”.
We are here for you …..again Thank you for letting us be a part of  your journey!   Love,  Uncle Danny & Auntie Jama

Uncle Danny & Auntie Jama Aquila

• Friday, August 20, 2010 9:29 PM, PDT

Hey StormyMathany Family we love you and cannot wait to get together soon. Thnking about you.

Love Reilly, Lolomi, and Tim (you know who we are)…;)

Timothy Mathany

• Thursday, August 19, 2010 7:48 PM, PDT

Momma Kate~I just sent my letter to my congressman.
Miss Getty, We can’t wait to see you on Sunday.  Give mommy big loves from us.
Stathem

Takoa Stathem

• Thursday, August 19, 2010 6:27 PM, PDT

Little Owl,
I am looking forward to our next photo shoot.  I think your new owls will make the cutest props in the world 🙂  You have a shout out from the volleyball team, we are prayin for you little one!
Love you,
Morgan 🙂

Morgan Saunders

• Thursday, August 19, 2010 3:32 PM, PDT

Dear Getty – We’ve never met, but I just wanted you to know that you and your parents are my heroes!  It takes a great deal of courage to share your experiences with the public, and by doing so you have forever changed the way many of us will live our lives.  Thank you for that gift.

PJ Whitmarsh

• Thursday, August 19, 2010 12:43 PM, PDT

Dear Mark, Kate, and Getty,

I only heard recently about your news.

Kate, my heart aches for your family but I can see that you are doing remarkably well, with loving Getty and learning all that you can.  I am glad to hear that you and Mark are dealing with this together and with such resilience.

Getty is, indeed, lucky to have parents such as yourselves.  All of her days are love-filled.

Susan Bush

Susan Bush

• Wednesday, August 18, 2010 8:17 PM, PDT

To Mark and Kate,

We love the photos of baby Getty…what a beautiful little girl she is, and how great it is to be able to experience the joy that loving such a cute little thing like Getty can deliver.

Being that you, Mark, are my kid brother, and Kate, his wife, I find it particularly difficult to focus my thoughts around why life chooses to bring some of the things that it does.  Some have it fairly easy, others not so much, and then there’s everywhere in between.

I have come to the realization that some things are infinitely complicated to attempt to understand, and some questions are simply meant to remain unanswered, at least for today.  Answers, however, to certain tough questions in life are often what people need most in order to help manage the things life brings their way, even though for now, they may not exist.

Which conveys me to another point.  This sites’ contributors may not know all of the answers, but look at the great it has done.  It provides some means to help manage some of life’s experiences.  It has provided the opportunity for people to come together as friends and family and to express love, emotion and care, and to share stories, photos, and deliver wonderful amounts of “good.”  We hope that this enormous amount of good shall always provide some way to help temper the things that may be not-so-good.

When I spoke to Mark on the phone recently, I made a discovery that impressed me very much; this being that you, Mark, are a much stronger man than I.  Take great care of your wonderful family.  I know you will.  And for Kate, I’m sure that you see the strengths this man is capable of providing.  Take comfort in that.

This world is a better place simply because of your opportunity to experience it with a wonderful daughter, and because of your willingness to share your knowledge.  A very clear message exists about what is truly important in life.

From here, know that you are in our thoughts every day, and that even though we may be physically separated by hundreds of miles, we’re also as close as you need us to be.  Mark, Kate and Getty, we love you very, very much.  From Mike, Michelle, Isabel, and Claire.

Michael stump

• Wednesday, August 18, 2010 10:27 AM, EDT

I don’t know you personally, and you don’t know me.  I am a lurker on SDMB.  I read your post about the Getty’s diagnosis and just had to let you know that you have a family in Maryland thinking about you.
I checked that thread so many times hoping that the doctor was wrong.
All I can offer is support from a stranger, as I know that there is nothing I can do or say that will make this easy for you.  My husband Brian, my 6 year old daughter Hailey and I will keep you in our prayers.  Please give beautiful Getty extra hugs today from us.

Monica Heilman
mheilman@cablespeed.com

• Tuesday, August 17, 2010 11:11 PM, PDT

Dear Kate and Mark,
During my years working with special children, I have found that they have taught me so much about what is truely important in life. Getty inspires as she holds her Mr. Teddy, enjoys her bath and finds her thumb.  But most inspiring of all, is the love and devotion that can be found in the words and pictures all over her page.  She is truely touching the lives of many.

You and your precious Getty, are in my thoughts and prayers.

Kathy Berkowitz

• Tuesday, August 17, 2010 10:26 PM, PDT

Kate, my heart is broken for you reading about your little “owl.”  She is so beautiful and sweet.  You’re really blessed to be able to have her  because we can tell she is a really special angel.  I know you and your husband will always cherish her and she is so lucky to have you for parents.

All our best wishes are with you and Getty.

Diane Wesley
joendiane@comcast.net

• Tuesday, August 17, 2010 5:35 PM, PDT

You are such a special and beautiful family – – all three of you.
Thank you so much for sharing your journey.  It is truly an inspiration.

barbara prowen

• Tuesday, August 17, 2010 9:38 AM, PDT

Hi,

I think of you all daily and check the website too, even though I have not always signed the guestbook.  The bear is really sweet and Getty looks like an angel.  Take care.  You are in my thoughts.

Becky

Becky Young

• Tuesday, August 17, 2010 8:50 AM, PDT

Good Morning Getty~Girl!  Just read mommy’s journal & she said you have a new friend Mr. Teddy!!!  That is so sweet..love the pic with your little hand holding her close to you…I just sent Gramma a card asking her what I could send that would be special for you but a gift from another Grandmother beat me, which is wonderful…you are that special little owl that we all want to give to…..those blue eyes and sweet smile bring out the best in all of us – you are capturing a “Getty-Girl World”……we love you & mommy & daddy very much!  We are just a “text or call” away……I’ll keep thinking of something just for our YOU!

Love ~ Uncle Dan & Auntie Jama

Uncle Dan & Auntie Jama Aquila

• Tuesday, August 17, 2010 8:29 AM, PDT

Kate and Mark:
Thank you so much for the”Chronicles of Getty”, it speaks to who you are that you are willing to share this difficult journey.

Getty (Little Owl) ,
Your mom writes that you took “joy in watching each tree”, we all need to do this, thanks for the reminder!
Love Deb

deb twilla

• Monday, August 16, 2010 8:56 PM, PDT

Hi Getty Girl,
Thanks for being on this awesome website and letting me be a part of your life.  It is truly an honor to live so close to you and to share your journey.
I’ll be stopping by to see your smile and hold you close once in awhile.
Much, much love precious one.
Your neighbor Pat

Gracie and Lottie say Hi…you’ve probably heard them yapping.

Pat Scott
pds1616@att.net

• Monday, August 16, 2010 5:07 PM, CDT

It turns out that Getty’s role in life may be like her mother’s: to teach. She is already teaching us some of life’s most important lessons like savoring the moment and making the most of what we have right now. Her huge smile and bright eyes tell us that our time together is too short, whether measured by days, months or years. Even so, it can last a lifetime in memories and joy because we have each other.
Getty’s message and example are spreading well beyond the reach of most. We look at that picture on the home page and smile. We may also cry, but she has us thinking,appreciating and loving.  That’s a valuable lesson right there.
Tx  to this little angel and love, Susan Gulbransen, Krista’s mother.

susan gulbransen
smiles@earthling.net

• Monday, August 16, 2010 1:07 PM, PDT

Mark and Kate,

We are truly sorry to hear about Getty’s diagnosis.  Thank you for sharing your jouney with everyone.  Rachel and Sarah are busily preparing a care package for Getty – we will be sending it out shortly.

Leslie

Leslie Stumpf

• Monday, August 16, 2010 12:35 PM, PDT

Mark & Kate,

What a beautiful little munchkin you have! I cannot wait to meet her (and you guys).

Mark, your last entry was so very astute, cherish every moment with Getty.

Kate, some of the things in your entries are so incredibly similar to things we said about our son, Luke. It was like he was always trying to make us feel better, that he had an old soul that was wiser than we were. His Nana said he was like a wise old man from the first day she met him. The trees on our walks seemed to fascinate him.

I hope we can help in some small way in your journey.

Glenn McWilliams

• Monday, August 16, 2010 9:35 AM, PDT

M&K,
Thanks so much for your very real heartfelt sharing. It is both healing and appreciated by everyone who reads it.

allen schaad

• Monday, August 16, 2010 8:45 AM, PDT

Mark and Kate,

Just read your “story”.  Getty is beautiful. Her eyes are wise.  SMA babies seem to have a wisdom that is special to them.  Take care.

Colleen McWilliams
colleenmcwilliams@surewest.net

• Sunday, August 15, 2010 11:45 PM, PDT

Thank you so much for today! It was so nice to see you. What a little charmer you have on your hands!

You are so lucky to have her and she is so lucky to have you. You both work so hard to give her the best life this world could offer and she knows it and shows it with every smile. Any child would be lucky to recive half the love that you show Getty. Let us know if you need anything! A hug, dinner, a break, more balloons, wine, anything!

I love you. Goodnight Owl (whoo whoo),

Anastasia Liebler

• Sunday, August 15, 2010 11:17 PM, PDT

Dear Kate and Mark,

I am so sorry to hear the news about Getty.

Our world is such a confused tapestry, woven of the most exhilarating beauty and of the most heartbreaking tragedy. At times, I find myself at a loss for words.

But I do know that just as you are blessed by having Getty, she is also blessed by the good fortune of having you as parents. Whatever else life may bring to you, it can never take that away.

If there is anything I can do to be of assistance to you, please feel free to call on me.

With love,

Mario

Mario Galván

• Sunday, August 15, 2010 10:22 PM, PDT

Wow, just read your journal entry for tonight Mark.
You are all an example of courage and honor.
May you continue to find the joy in every day.

Gail  (Mark’s cousin)

Gail Blais
gailanne2@msn.com

• Saturday, August 14, 2010 9:20 AM, PDT

We’ll be shining bright for our Getty and all the other SMA fighters and angels!
~Stathems

Takoa Stathem

• Saturday, August 14, 2010 8:54 AM, PDT

“There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.” – Albert Einstein

Thanks for reminding us to look for the everyday miracles.

My thoughts are with your family.

Gina Timm

• Friday, August 13, 2010 10:30 PM, PDT

What a wonderful evening! I am sure that you will remember it forever. 🙂

Christina, Marley, Tonks, and I say hello (well Marley and Tonks say meow) and we all love you all very much. Christina and I think you you offten and hope to visit you soon if that is alright.

Goodnight sweet owl, your in good hands.

With all the love in the world,
Anastasia L.

Anastasia Liebler
aliebler@beca-aba.com

• Friday, August 13, 2010 9:24 PM, PDT

Kate,

I have been reading about Getty tonight, and I am deeply humbled by you and your family’s amazing optimism and strength. If there is anything, and I do mean anything, that I can do please do not hesitate to let me know. You and your beautiful family are in my thoughts.

Kerri Thruelsen

• Friday, August 13, 2010 7:38 PM, CDT

Hi!
Getty is beautiful!
I found your site through another SMA mom.
I just wanted to introduce myself and my daughter who has SMA type 1. Madison is 13 1/2 years old. She wasn’t diagnosed until 8 months of age but she had symptoms of SMA way earlier even in utero. She uses bipap at night and 24/7 when sick. We follow the NIV protocol and amino acid diet. She can talk and can drive a powerchair. She writes her own caringbridge page using a special computer mouse.
http://www.caringbridge.org/visit/madisonreed

There is hope for these kids. Research is moving like lightening. Visit our site for the latest info on the promising gene replacement therapy being done in Ohio.
http://www.miracleformadison.org

SMA kids bring more joy than you can even imagine! Stay positive for Getty and she will fight. There are things you can do to help them. It’s your choice. I could never sit back and not at least try to do all I could. Remember that every SMA child is affected differently. No one knows what is in store for Getty except God.

I beleive in miracles! Please contact me if you have any questions or need to chat. Big HUGS!

Annette Reed
miracleformadison1@mac.com

• Friday, August 13, 2010 4:06 PM, CDT

Hi! I was connected to your CB site through Meri, Aaron’s mom. I’m sorry to hear about Getty’s diagnosis, but it sounds like she’s got some great parents and family to take care of her.

edlyn s
edymyboy@yahoo.com

• Friday, August 13, 2010 11:56 AM, PDT

Getty,
FIGHT….I know you will!!

Jim Shoemake

• Friday, August 13, 2010 12:53 PM, CDT

Getty is adorable!  So sorry to hear of her diagnosis but please know that there is a wonderful SMA “family” that is a wealth of info and support.  My SMA type 1 daughter is 6 yrs old,  is in 1st grade, plays Miracle League baseball, loves plays, her cat and driving her powerchair.  Dani was diagnosed at 7 months but had simptoms prior to that.  Please know others are here to help.

Beth Pruitt
bethtg@insightbb.com

• Friday, August 13, 2010 11:09 AM, CDT

Getty, you are absolutely beautiful! Please know you all are not alone in this journey. We’re a pretty close and caring community and there are many people who will help with advice, listening or just being there (virtually!). My daughter will be 6 years old in 2 weeks. She was diagnosed at 5 months. Please check out her site!
www.caringbridge.org/visit/veronicarosestonge

Best of luck to you!

Debby St. Onge
debbystonge@gmail.com

• Friday, August 13, 2010 8:56 AM, PDT

Hi there, you don’t know me, but I know what you’re going through. My daughter, Ashley, has an 8 month old son, Charleston, with Type 1. He was diagnosed at 3 months and it’s been a roller coaster ever since. Please know that the SMA family is close and there to help/cry/holler/support/share joy/share sadness with each other at a moment’s notice. Not sure if you’re on facebook, but there’s a great community there. Also do you know about smaspace?????

Hang in there you guys…..we’ll be praying.

Teri Taylor
blinger1@aol.com

• Friday, August 13, 2010 9:19 AM, CDT

Getty is beautiful!!!!!  I found you through Meri Phelps.  I’m Sarah, mom to Stella who is almost 3 1/2 years old.  Stella was diagnosed with Type I SMA at just one month of age so just wanted to give you a little hope.  She had her gtube/nissen fundoplication at 5 months and started bipap/cough assist at that time.  Yes, we have had ups and downs but you get them through it and things are good again.  The first year was the hardest for us, probably because everything is new but everything becomes a new normal.  Stella just recently got trached and it was something we said we never would do but she’s doing great and still coming off the vent 8-10 hours a day.  What heros they are!!

If you have any questions, let us know!!  We send you our hugs, love and prayers from Iowa!
Sarah and Stella
www.caringbridge.org/visit/stellaturnbullturnbull

Sarah Turnbull
sarahmarieturnbull@hotmail.com

• Friday, August 13, 2010 9:18 AM, CDT

Getty and family,
I am so sorry to hear about your diagnoises. The SMA family is close one, always willing to help or just lend a shoulder. We are a little over three years post diagnoises and I can honestly say without other families we wouldn’t have Aiden here, happy and healthy (for a type 1). Please do not hesitate to contact me if you need anything.
www.caringbrige.org/visit/aidenbundy
Sending Getty some biggie hugs!

Dawn and Aiden Bundy
bundygirl75@aol.com

• Friday, August 13, 2010 2:06 AM, CDT

Just know that you have people near and far who love and care about you.  Your courage and strength is admired.   Although I have not met you Mark..I know you are an amazing person because you have an amazing life partner in Kate.  Getty couldn’t have a better family who is going to give her the best life she can have.

Please know my thoughts and prayers are with you.  I am here if you need anything… big or small.

Kerri Willis
kerriwillis1977@gmail.com

• Thursday, August 12, 2010 10:20 PM, PDT

Mark and Kate,

I was saddened to hear of Getty’s illness and I am sending my love and prayers for you and all of your family.  After reading your journal entries, it is clear to me that your strength and committment and unconditional love for Getty will get you through this difficult journey.  You were right when you stated that your work family would be there for you and help you to keep going.  I experienced that support and love and know its power.  You and Mark are amazing parents to a wonderful little angel.  Celebrate every moment you have.

Gay Strong

• Friday, August 13, 2010 12:04 AM, CDT

Hi Mathany it’s Jen Schmall … You know the one that was always late and talking in class 🙂 I just wanted to write and let you know I’m so sorry and sad to hear about your beautiful baby girl and what your family is going through! You and your family will be in my thoughts and prayers!

Jen Schmall
jen.schmall@yahoo.com

• Thursday, August 12, 2010 9:52 PM, PDT

Hi Getty, Kate and Mark,

You are in my thoughts and prayers.  If you need anything, please let me know.

Becky

Becky Young
balmy4@hotmail.com

• Thursday, August 12, 2010 9:39 PM, PDT

Kate,
I wanted you to know how very sorry I am for you. I am here for anything that you and your family need. You are an inspiration to us all and we appreciate you sharing your story. Getty is beautiful and I know she is just like you, FIGHTER with a very special spirit.
All my love,
Chevas

Chevas Rainer

• Thursday, August 12, 2010 7:52 PM, PDT

Hello Mark, Kate, and Getty,

I hope that you all had a wonderful day!

Mark- I love your wife very much. She has made such a difference in my life and is so very important to me. I can not describe how comforting it is to know that, although this is the hardest thing either of you have ever experienced, she has her best friend by her side very day. You are truly an amazing and strong person. You all could not be a better family.

Kate- I love you very much and hope that you got in plenty of bath time today. 🙂

Getty- (BIG KISS) you are such a blessing. Thank God for you. You make everything better. I love you very much.

With all the love in the world to you all,
Anastasia L.

Anastasia Liebler
aliebler@beca-aba.com

• Thursday, August 12, 2010 7:47 PM, PDT

Kate,

Takoa forwarded me your beautiful Getty journal.  I want you to know Getty and your family will be in my prayers nightly.  She is so beautiful with the most sparkling beautiful eyes!  I remember seeing your sparkling eyes at the Nike Fittness Women’s run when you talked about Getty and she obviously has the sparkle from you.  I will think of your family often.

Shea McKown

Shea McKown
shea14048@yahoo.com

• Thursday, August 12, 2010 6:46 PM, PDT

Hello Mathany and family!

I am so deeply sorry for the pain you must all be going through and I will pray for your family every night, my family is now following your story, My dad sends his prayers and love and he told me to let you know you are such a wonderful lady and he can’t imagine what you are going through and that he still treasures the fact that you used to let him sit on the side lines to watch our soccer games. I read your story to him and we both started to cry! My heart goes out to and your family. Getty has the most beautiful eyes I have ever seen! Your daughter is absolutely gorgeous. Your right thought your daughter has accomplished more in her life time then most will ever compare to in fact she already inspires me to be a better person.

Lots of Love and prayers Abbi Foutch, Mark Foutch, and George Foutch

Abbi Foutch
afoutch_3@yahoo.com

• Thursday, August 12, 2010 3:59 PM, PDT

Dear Kate and Family,

I was so saddened to read your news about Getty. Please know we are praying for strength for each of you.

Jennifer Billeci (Harris)

• Thursday, August 12, 2010 3:31 PM, PDT

When reading about your little baby Getty I couldnt help but cry for you. I’m so sorry you have to go through this. Your daughter is such a beauty (with AMAZING lips i must add). Stay strong, you will be in my thoughts everyday and my prayers.

ashley casey
ashleey628@yahoo.com

• Thursday, August 12, 2010 2:15 PM, PDT

The news of Getty’s condition has shaken me to my core. It is hard for me to find the words, fearing I may say something wrong or upsetting, knowing my words won’t console. Nevertheless, there are a few things I’d like to share. My first two pregnancies ended in miscarraige at 3 months. I say this not AT ALL to compare my situation, but to express that at a fairly young age I learned some small lessons about the unjust nature, fragility, and unpredictability of life. I began to see things differently. After a preganancy wrought with fear, I had Miles at the age of 23 and he changed my life forever. To this day I credit him for bringing out my best qualities. He taught me I had a capcity for love, selflessness, patience, and committment on a level I didn’t know I was capable of possessing. He gave me clarity of vision. From reading your journal entries I can see that Getty will be your greatest teacher. It is so evident how she brings your life immense joy and love. I will confess that I’m not very religious, but this week I prayed for your family with the deepest sincerity I have within myself and the love only a parent can know. She is absolutely beautiful. Let me know if ther’s anything I can ever do for you.

Mitzi deFer

• Thursday, August 12, 2010 2:12 PM, PDT

Kate…..My heart has been aching for you, Getty, and your family. You are all at the top of my prayer list. Thank you for sharing these online pictures and journals….it is so true that your 4 month little girl has managed to put things in perspective for so many people, change their lives, and really force them to live in the moment (including me). I already ordered my Team Getty attire. I am here for you so please let me know if I can help in any way! We love you all soooo much!

Sara Montero
saramontero@sbcglobal.net

• Thursday, August 12, 2010 2:02 PM, PDT

Kate – My heart is just broken for you and your family. Just seeing that little face of your little girl when you post pictures, always makes me smile and believe that anyone will fall in love with her. She is and will always be the most precious thing in your heart. She is the luckiest little girl to have you as her mommy. I truly do try and cherish every single day in my life with the people I love so much. I will be following you guys and your story and there won’t be a day that goes by that I won’t say a little prayer for your precious angel, your little “owl.”

Jen Stimson
stimsonjen@yahoo.com

• Thursday, August 12, 2010 12:45 PM, PDT

Kate, Mark and Getty….

I wanted to let you know that you are in my prayers, and If there is anything you guys might need just let me know.

I also have to say that I love the new family photos, they are amazing. They show how much love there is in your family.

Angie B

• Thursday, August 12, 2010 11:41 AM, PDT

Hello family! I heard the news and I think about you guys everyday. I just wanted to say that Allen and I are here if you guys need anything, like dog sitting! We live right up the road! I love you guys and you are in my prayers! Hope to see you all soon!

– Whitney

Whitney Smith/ Aquila

• Thursday, August 12, 2010 11:37 AM, CDT

Kate, Mark & Baby Getty

The pictures are BEAUTIFUL!!!!  I am thinking and praying for you every day.  It brings tears to my eyes looking at the pictures of your adorable baby girl.  Please let me know how we at school can help and support you.  Love you all!

Shelley Jerue

Shelley Jerue

• Thursday, August 12, 2010 11:04 AM, EDT

Thinking of you every day, and every time wishing you joy and hope.

Julia (Dung Beetle at SDMB)
vamdpa42@yahoo.com
Gainesville, FL
United States

• Thursday, August 12, 2010 6:42 AM, PDT

I love the picture of the three of you with your head’s touching!  All of you have such a powerful message behind those facial expressions!  Kate~you and Mark are doing everything a child could ask for and more.  TEAM GETTY!
Love, The Stathems

Takoa Stathem

• Wednesday, August 11, 2010 11:01 PM, PDT

Getty Girl ~ Wow!   What incredible pictures!  You are so easy to capture in pictures because you are so beautiful!  Those blue eyes & full little lips make you just perfect for a “picture moment”!  Kate & Mark these are wonderful!  Morgan did a great job of capturing all of you in a very special moment………….Love them!

Uncle Dan & Auntie Jama Aquila

• Wednesday, August 11, 2010 10:49 PM, PDT

Kate and family,

I was talking to Becky tonight and she shared the tragic news about your sweet baby girl. My heart is so heavy…..I just wanted to let you know that I am thinking of you and praying for you and your family in this time of need.   I read your beautiful blog and you both are an inspiration to those around you.  Please know that if you need anything…..anything at all, we would be more than happy to help.

Sarah Ellis
sarahhe4@yahoo.com

• Thursday, August 12, 2010 1:23 AM, EDT

Thank you for sharing your life with Getty with us. She’s a beautiful baby, and she is a source of joy to all who see her smile. You’re in my thoughts, may you continue to cherish every moment you can. You are giving her the best gift anyone can hope for, a life filled with love.
Hugs to the little Owlet and both of you.

Margaret Buckley

• Wednesday, August 11, 2010 10:02 PM, PDT

Good evening  Little Owl !!  Just got back after a few days gone and immediately came to read your journal !  We are so sorry the news was what all of us have prayed for you not to have to hear!  There is one saying that has helped me thru some really tough times  and it   might help at times:
“Life is not measured by the number of breaths we take, but by the moments that take our breathe away” ~ daddy playing airplane with your paci and you joining in on the fun with your giggles is one of those moments ~  we can see this vision with all of our hearts.  Love you Kate & Mark .  Thank you for sharing your goods times and sad times with us….Your “Little Owl” has taken on a world of her own………it grows everyday as more & more people come forward to join with all of you to help her fight this battle!  You are not alone & because  of those beautiful blue eyes and that incredible smile your TEAM will only continue to grow…..
Good Nite for now – and Getty Girl you are in my dreams..Love all of you……….Auntie Jama

Uncle Dan & Auntie Jama Aquila

• Wednesday, August 11, 2010 8:47 PM, PDT

Kate–
I just heard this news from Takoa or you would have heard from me sooner.  I truly am beyond words.  I am so sorry.  Getty is such a beautiful little baby and is so lucky to have 2 wonderful parents like you.  So, what can I do, how can I help?  Please let me know.  You guys are in my thoughts.  Again, I am so so sorry.  Love you,
Becky

Becky Snow
beckysnow76@yahoo.com

• Wednesday, August 11, 2010 6:17 PM, PDT

Sometimes it takes an Angel to remind us how precious life is.  Getty is a wake up call for so many of us.

Kathy

Kathy Raney

• Wednesday, August 11, 2010 12:54 PM, PDT

Dear Mark and Kate,

Oh my gosh, where do I start? It has been an extremly long time since I have seen you Mark, we grew up together as kids. John and I are the same age and my brother Scott and your brother Corky were best friends. I’m in contact with your mom, I should say our families are still in contact.

I’m rambling… First let me say that you and Kate have THE most beautiful little girl. I’ve read your journal and I must admit, I’m am so impressed with you and Kate. The amount of love between you is so emmemce and that love shows right through to the most beautiful blue eyes of your daughter Getty. My heart is absolutly broken over Getty’s diagnosis. I’m really stumbling to find the right words and the truth is I can’t, this just isn’t fair.

I guess what I really want to say is that your family is in our nightly prayers since we found out about Getty. I think of her multiple times a day and how I wish things were so different.

I want you to know that I think both you and Kate are amazing parents and Getty is so lucky to have you, as much as you are to her. I am a great believer in miracles, I have one in my daughter and I will be praying for that miracle for you as well.

Please give your beautiful Owl, a big squeeze and a kiss from your childhood friend and know that what ever you need or I can help with, I would in a second.

Lots of prayers and huggs sent your way.

Kim

Kim Hicks-Haney
Camarillo, CA

• Wednesday, August 11, 2010 1:05 PM, CDT

Mark, Kate, and Getty
A note to let you know that we are thinking about you guys. What a cute picture of Miss Getty.
Yesterday at work we had a Remembrance and Hope service. It is given by our hospital chaplain. It was not so much a religious ceremony but a wonderful spiritual ceremony–it consisted of lighting a candle and prayer stones for someone you love. I lit a candle for you and Mark for all that you are going through–I just can’t image. I then for Getty, wrote a prayer on a stone and placed it the communal vase. Once the vase is full, they are blessed and placed in the hospital atrium.
I know you are overwhelmed now, so I do not want to bother you but if you need anything please do call us. I have been in contact with your mom. Love you guys, Al & Tammy (Will try to connect in the next week or two, still have Getty’s bunny from Edgefield to get to her.)

Tammy Schaad
tammy.schaad@chw.edu

• Wednesday, August 11, 2010 6:21 PM, JST

I’m so sorry to hear the news. I was hoping against hope that the blood tests would show something less devastating.

I like the attitude in your quote, to live each day to its very fullest. It is all we can do, really.

It is hard to know what to write but I wanted to let you know that I’m reading along and keeping you in my thoughts along with many others on the Dope.

Vicky (Hokkaido Brit)

Vicky Kobayashi
seivic@amber.plala.or.jp
Japan

• Tuesday, August 10, 2010 10:14 PM, PDT

Hello,

I just wanted to tell you all that I love you. We think about you all every day, all the time. I hope that you had a great day with your Little Owl.

With all of my love,
Anastasia L.

Anastasia Liebler
aliebler@beca-aba.com

• Tuesday, August 10, 2010 2:54 AM, EDT

Hey little Owlet.
Just wanted you to know I have been thinking about you a lot, and haveing some folks I know pray for you. Sleep tight little one!

Beth H

• Monday, August 9, 2010 5:30 PM, CDT

Thinking about all of you today (and everyday, really). Jeff and I so enjoyed seeing Getty’s infectious smile on Friday night. She is beautiful, and you guys are amazing parents. I appreciated your journal, Kate, about slowing down. I think that’s a lesson we all need. Thank you for the reminder. 🙂

Hope we can see you again soon. Miss M wants to see her friend!

Hang in there, and let us know how we can help!

Sent from the CaringBridge iPhone App

Nicole Kukral

• Monday, August 9, 2010 5:24 PM, CDT

buhito (liitle owl)

Greetings Getty girl! It’s your friend Ms. Linda from here in San Antonio ,TX. Right now your parents need you to keep it strong not only for them but for yourself. One thing I have learned about childen is that God gives you all a strength that surpasses any adults. It seems that you bring joy, strength, and amor (love) to everyone you meet. Even though God has decided to throw this obstacle at you don’t ever give up on milagros (miracles).  You obviously have been chosen for this journey so embrace it with courage and spirit of corazon (heart). God has a plan little Owl.
Mark & Kate,
Believe in miracles. They actually happen!

from my corazon to yours,
Linda

linda quintero

• Sunday, August 8, 2010 9:23 PM, PDT

Dear Mark and Kate,

Your parents told us about Getty. We don’t have the words to express how sorry we are. We would love to come up and see the three of you soon, if that’s OK. We’ll be in touch.

Love,
Craig, Suzanne and Amanda Rankin

Craig, Suzanne and Amanda Rankin
Berkeley

• Sunday, August 8, 2010 8:02 PM, CDT

I’m keeping you all in my thoughts. I know how hard it is to have a sick child, although my daughter didn’t have the problems your gorgeous Little Owl does. So, I think of you all every day.

Ellen Patterson
Indianapolis, IN
Indyellen on SDMB

Sent from the CaringBridge iPhone App

Ellen Patterson

• Sunday, August 8, 2010 12:37 PM, PDT

If there is anything in the whole world that you need or that I can do to help please dont hesitate. You are so lucky to have such a wonderful owl and she is luck to have you both aswell. With all of my love. Have an awsome day with that sweet little hoot.

Anastasia Liebler

• Sunday, August 8, 2010 8:14 AM, PDT

Good morning Getty Girl…. sitting by the pond where we sat when you were here over the 4th and I just keep smiling thinking of you with balloons tied to your little wrist and the picture of you giggling and talking to them is so precious!  You are such a little talking – you  really have alot to say and with Mommy, Daddy and Cooper next to you every word is definitely heard…. have a wonderful day and know that alot of people are smiling and thinking of you!!  Thank you Mark & Kate for the wonderful Journal……it helps us that can’t be there to feel that we are…..Love all of you.  Auntie Jama

Uncle Dan & Auntie Jama Aquila

• Sunday, August 8, 2010 8:00 AM, PDT

Dear Little One,

Thought about you every day during our vacation.  Couldn’t wait to get back so I could see you.

What a blessing you are!

Aunt Patti

Patti Strader

• Saturday, August 7, 2010 7:21 PM, PDT

Miss Getty girl,
I want you to know that William Jessup University’s Women’s volleyball girls are your prayer warriors for life.  We think of you every practice and every night.  We hope that maybe you will be able to come to one of our games so you know that we’re actually the one’s cheering you on.  We love you little one.  Stay strong 🙂

Morgan WJU Women’s Vball Team

• Saturday, August 7, 2010 5:47 PM, PDT

Hi Getty and Mark and Kate,

We love you so much and hope, wish, and plead for the health of Getty. You two are amazing parents and we love you so. Lets get together soon, I will even cook steak for you guys on the barby…;)

Tim, Lolomi, and Reilly Mathany

• Saturday, August 7, 2010 4:57 PM, PDT

What a beautiful little girl you have!  It is truly amazing that such a little person can bring so much love to our lives.  I am deeply saddened to hear about Miss Getty’s diagnosis. Your family is in our thoughts and prayers everyday.  Kaylie has even added Getty to her bedtime prayers.

Please let me know what I can do for you.  Even though I live far, I am here for you always!

Love,

Becky

Becky McKee
Redwood City, CA

• Saturday, August 7, 2010 5:30 PM, EDT

I was so saddened to hear about little Getty’s diagnosis. You daughter is a beautiful little ray of sunshine. I hope that you all are able to find peace, joy, and love in whatever time you have together.

Good luck and God Bless.

DoperChic at SDMB

Jessica Abernethy
starlightwcu@yahoo.com
Avondale, PA

• Saturday, August 7, 2010 11:14 AM, EDT

Wishing you comfort, joy and peace.

Kate Elliott
Providence, RI
United States

• Friday, August 6, 2010 9:36 PM, PDT

Love to our Getty girl we had a great day at Grammy and Papa’s house. Found a new kitty friend she was so soft…..You give so much joy and love to our Grammy and Papa. and to everyone that meets you… have a good night our little owl…see you real soon..

love,

Grammy and Papa
Mathany

nola mathany

• Saturday, August 7, 2010 2:02 PM, NZST

Hello Guys
Hollys parents here from NZ. Oh what a beautiful girl Getty is. Guys we understand what you are thinking & going through. Our thoughts are with you.

Be strong together & you will get through this for Getty.

thinking of you
Greg & Nic

Greg & Nicola Hartwell

• Friday, August 6, 2010 3:24 PM, PDT

Dearest Kate, Mark, and Beautiful Getty,

Our thoughts and prayers go out to you.  We are trying to digest all this, it isn’t fair.  All I know is that God has his plan for all of us, we don’t understand why sometimes but he will take care of us all.

Rob asked me to pass his love and prayers on to you.  Uncle Mike says he loves you, (Kate you are his special birthday girl).

We all love you so much.  Know that we are here for anything you need.

With love and prayers,
Aunt Alberta & Uncle Mike
mathany61@snowcrest.net

Alberta Mathany
Mount Shasta

• Friday, August 6, 2010 3:10 PM, PDT

Kate, Mark, and Getty,

I was so sad to hear of the news about Getty.  Aunt Colleen called my mom yeasterday, and we both were just devestated.  Living with muscular dystrophy has been hard for me, but I can’t even imagine what you both are dealing with right now.

I’m sending my love to all of you, and know that I am saying special prayers for Getty.  I will be down in Sacramento in a couple of weeks, and if it’s not too much trouble, I would love to visit with you Kate, and to meet Mark and my cousin Getty.

If you need anything at all, please let me know, even if it’s to just talk, or whatever.  My love to you all,

Linda

Linda Mathany Zanni
zannilinda@yahoo.com
Mount Shasta, CA
United States

• Friday, August 6, 2010 4:28 PM, CDT

I am of course so sadden, shocked, angry, at learning about this whole thing.
I am sadden because a sweet little girl is not in the best shape and has a challenge ahead of her. I am angry that nature, or if one prefers God, allows this to happen to wonderful people and innocent children. I was shocked when my friend told me about this the other day; I still can not get fully over the shock.

But, I try to see the silver lining, that while this is horrible and I can only imagine what my friends are going through, that they are getting as much joy as they can out of one of the best gifts on earth–a little baby girl. I have only seen her in person 3 times since birth, but I can see the magic that she has placed in the hearts and mind of her Mommy and Daddy. Getty you are a blessing and a wonderful child.

I just hope that I can help in any way.

Love You Guys,

Jeff

Sent from the CaringBridge iPhone App

Jeff Kukral

• Friday, August 6, 2010 11:20 AM, CDT

Good morning, sweet Getty.

Grandpa Stump and I can envision you happily paddling in your baby bath.  Your honorary family Jan, Beth, and Jennifer send their love as does Sr Theresa FCJ in Calgary.  Your mommy and daddy will be getting the balloons for you.  This would make a great photo shoot.

Your buddy Cooper made a good guard dog as he walked quietly beside me into your room.  You were smiling as you scanned the ceiling and eyed the numerous colored kites your grandma Nola hung for you.

Much love every second of every day you and to mommy and daddy.

Grandma and Grandpa Stump

Evin & Evelyn Stump
redux00@hotmail.com
Temecula, CA
United States

• Friday, August 6, 2010 11:25 AM, EDT

Through the darkest times, we often find a path with someone we least expected, someone who has walked that dark horrible walk themselves.  You may feel you are on an island of despair, but you are not alone during this time.

Peace.

Joan
(ShirleyUjest via SDMB)

Joan Arndt

• Friday, August 6, 2010 12:19 AM, PDT

Hi Precious Getty-Girl – I’ve been here many times today – but keep leaving to go look at my Getty-Girl album – with so many pics & videos of you…..maybe it’s only been  4 months since Mommy sent us that first picture of you only a few hours old ~your family fell in LOVE WITH OUR NEWEST BABY GIRL!!!  You have bought us so much in just 4-months ~ that Getty now it is our turn to give to you….and Daddy & Mommy…..what ever you need we are here for all of you…..Getty is our PRECIOUS JEWEL and the world is hers! Auntie looks at the video when you were lying on Grammy & Papa’s bed, you are just giggling and of course all of us are hoping you are giggling at us but if the truth be told it was Cooper you were looking at……..Darn!  But it’s on video…….now that Auntie is finally here – I will visit you often & it’s up to Mommy & Daddy to share (they wiil)!
LOVE ALL YOU SO MUCH & ARE HERE FOR YOU ……”PAPA & JAMA!

Uncle Dan & Auntie Jama Aquila

• Thursday, August 5, 2010 11:14 PM, EDT

I’m saddened to hear about Baby Getty.   Remember to take gentle care of you and your wife.  Baby Getty is one lucky girl to have such wonderful parents.

Ruby @ SDMB

• Thursday, August 5, 2010 8:09 PM, PDT

Kate, Mark and Getty,
Mark’s cousin Gail here. I just received the news in an email from Evin.  What a cutie Getty is!
I hope and pray that all your moments together are blessed.

Gail Blais

• Thursday, August 5, 2010 7:38 PM, CDT

Dear Mark & Kate,
I just spoke with your Mom this afternoon and I am still in shock about the news. I just wanted you to know that Al and I are thinking of you. I am so glad that  you have people that have gone through this to talk to and to help you through this. Sweet Getty, I am glad that you like the bath, keep kicking to build up your strength. We will be in touch soon and PLEASE call us if you need anything. Love and prayers, Al & Tammy

Tammy Schaad

• Thursday, August 5, 2010 4:48 PM, PDT

Beautiful Getty, Kate & Mark,
We Love You all and have been so touched by you already. Getty, you little Angel, we always smile when we think of you and talk about you.  Its been a great gift to see you in the family. Mark and Kate , know that The Johnstons and all family are here for you for anything. Always good thoughts and prayers forever!! Getty , you precious girl, WE LOVE YOU ANGEL!!

Shelley & Dean, Cole,Kyle & Shellene
Redding, CA
USA

Shelley Johnston
appleliz04@aol.com
Redding, CA
United States

• Thursday, August 5, 2010 4:05 PM, PDT

Bear,
My heart goes out to you and your family.
You are all in my thoughts and prayers.
Rick from SDMB

Rick Ewald
Los Angeles

• Thursday, August 5, 2010 4:17 PM, CDT

I know there’s nothing I can say that will make any of this better. Just know that I’m thinking about all of you and sending so much love your way. If you need anything, please let me know. Seriously. Anything.

Love you guys.

Nicole Kukral

• Thursday, August 5, 2010 3:08 PM, CDT

I’m here for you guys. All three of you

Jeff Kukral
jeffkukral@sbcglobal.net
Fair Oaks, CA

• Thursday, August 5, 2010 11:39 AM, PDT

Katie and Mark,

Chuck and I are so sorry to hear about Getty.  If there is anything we can do, please do not hesitate to call.  If you need something built for her, your house cleaned, a hug and call to your Mom Katie, anything.  We will be moving to Orangevale on September 1st so will be closer.  I hope Getty only sees smiles and hears laughter and music.

Kathy Raney
craney76@comcast.net

• Thursday, August 5, 2010 2:26 PM, EDT

Hey little Owlet, and Mark and Kate too.  Just wanted to say you are in my thoughts and prayers!

Beth H

• Thursday, August 5, 2010 10:47 AM, PDT

Just a note to let you know that you will be in my thoughts and prayers as you continue this journey.

Love,
Jo Anne Walker

Jo Anne Walker

• Wednesday, August 4, 2010 9:40 PM, PDT

Leyton and I are also thankful for every moment we have with Getty.  He is going to make sure to be more open to her conversations on every play date!  We are thinking about you every day and love you dearly!

Stacey Ball
staceyball@gmail.com
Sacramento, CA
United States

• Wednesday, August 4, 2010 9:32 PM, EDT

I am keeping your beautiful daughter and your family in my thoughts. Please keep Caringbridge updated even when you cannot make it over to the SDMB for updates.

Joan (Shirley Ujest from SDMB) Arndt

• Wednesday, August 4, 2010 4:33 PM, PDT

Oh my goodness Kate words can not describe how I am feeling right now. Please let me know if there is anything I can help you with. My thoughts and prayers are with your family.

Stephanie Salgado
ssenterprise916@yahoo.com

• Wednesday, August 4, 2010 3:42 PM, PDT

Miss Getty, you know we all love and adore you.  We proudly and lovingly join TEAM GETTY!

Takoa Stathem

• Wednesday, August 4, 2010 4:52 PM, CDT

First of all, your baby is beautiful. Second, Getty Storm is totally a kick-ass super hero name. Third, I really REALLY hate this for all of you and wish like hell it didn’t happen. I’ll be watching and wishing I could make it better!

Shelli Bean
MS

• Wednesday, August 4, 2010 11:21 AM, PDT

I am so sorry to hear this news about Getty.  She is a beautiful baby who I know that you will surround with love.  Please know that a stranger is thinking about you.

Elizabeth Nugent

Bump, Set, Spike!

From Kate:

Last night Getty and I traveled to Rocklin with Miss Mady and Takoa to watch our beloved photographer, Morgan play volleyball for the Lady Warriors at William Jessop U. We had a great time, watching the girls warm-up and encourage each other.

Playing soccer my entire life, I got an incredible experience playing with teams and learned what it takes to work hard for your teammates. I couldn’t help but think what kind of an athlete Getty could be if she was on that court. I quickly stopped thinking about that because I started to get emotional. Once I get going, there is no stopping me, so I straightened up and focused on the game.

Right before the match started the girls met up and cheered. All of the sudden an extremely loud “GETTY” came from the group. I was instantly overcome by emotion. How incredibly sweet that was. Thank you lady warriors.

We enjoyed watching the game. I noticed that Getty was watching all the movement on the court, the waving net and there were times when I believe she was following the ball. I think more than anything the noise coming from the cheering crowd had her attention. I was a little worried about whether she would be okay and she seemed to settle in after Takoa made her the littlest cotton ball plugs for her little ears.

It was a good night. It was so nice to hold my little one while we watched the game. It was so nice to watch Miss Mady give Getty all kinds of love. It was nice to be in the company of a good friend.

On the way home Getty was all tucked into her car seat, cuddling Crunchy Lion. As we drove home the sky was black with only a few lights guiding our way. I turned the music off and just drove in complete silence except for the sweetest sounds coming from little Getty.

As a kid, we would travel to places at night in the car, I was always so comforted by the murmuring sound of the engine. My Mom would tuck me in to my seat and I would just watch out the window and just be in awe of the lights, the stars and the comforting sound of cars driving by. As I drove home last night I was wondering if she was enjoying the same things I did as a kid. Was she feeling comfort by the drive? I believe she may have, because as I pulled her out of the car when we got home, she was sound asleep. Goodnight little owl.

Wonder

From Kate:

As we have journeyed through life since Getty’s diagnosis, there have been situations or experiences that would be far better explained from the lyrics of a song. You know how a song can really capture a thought, feelings, or just an overall summary of an experience.

Well as Mark, Getty, and I sat in a room in the department of Pediatric Specialties, and we watched doctor after doctor introduce themselves and talk to us and then leave, only to have another one come in and do the same. Kind of like a revolving door of specialists. At exactly the same time there was a song playing in my head, perhaps to calm me, but really to capture the experience of September 7th. I could hear the song Wonder, by Natalie Merchant in the background of my mind. It is a sweet song that embraces the mystery of the human being. I am bias, I think Natalie wrote it for all of our beautiful SMA babies. 🙂

Some of the lyrics perfectly capture Getty’s experience. “Doctors have come from distant cities, just to see me, stand over my bed, disbelieving what their seeing. They say I must be one of the wonders, God’s own creation, and as far as they can see, they can offer no explanation.”

There was a moment yesterday that reassured me that Mark and I were doing all we could for our little owl. The neurologist mentioned how “plump” she looked. “She must be getting so much love, keep it up you guys.” Mark and I grinned from ear to ear.

Getty was examined by all of her doctors and they were just elated by her progress and were excited by her strength. We couldn’t agree more.

The picture attached is a Getty and her Crunchy Lion. She seems to take him everywhere she goes.

Team Getty

From Mark:

Getty has met her entire team at Kaiser: Pediatrician, neurologist, speech therapist, radiologist, nutritionist, pulmonologist, gastroenterologist, pediatric nurse practitioner, and social worker.

The consensus is that Getty’s systems are strong and stable. Her blood oxygen levels, respiration, swallowing, and digestion are all normal. She doesn’t need any special equipment yet, which is great news!

Kaiser Team Getty is a wonderful group of people and they all seem genuinely eager to help her however they can. Thank you!

We need to prepare Getty for winter because something as simple as catching a cold can really take a toll on an SMA baby.  Otherwise, other than hypotonia (floppiness), all signs are good at this point.  Now that we have a solid baseline, she’ll be visiting members of Kaiser Team Getty about once a month.