Getty Owl Foundation

One Step Closer to Cure Spinal Muscular Atrophy (SMA)

From Mark:

Gene Therapy human clinical trials are OPEN and recruiting participants!

Gene Therapy is a research program at Nationwide Children’s Hospital, conducted by Dr. Brian Kaspar. The basic goal is to use a special virus to replace the ONE missing gene causing Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children. Once in place, by a single injection, the new gene is expected to work just like the missing gene should work, completely wiping out SMA at the source.

A lot of questions need to be answered in this process regarding safety and efficacy. The only way to truly answer them is to try gene therapy on humans and take all precautions along the way. Some amazing SMA families will step up into this program and help move the entire SMA population closer to a cure.

 The trial is open to the following children:

• SMA Type 1
• Age nine months or younger at the day of injection
• Bi-allec SMN1 gene mutations with 2 copies of SMN2
• Onset of SMA before age 6 months
• Hypotonia with delay in motor skills, poor head control, round shoulder posture, and hypermobility of joints

For exclusion criteria and more information – CLICK HERE.

Getty Owl Foundation has been a proud supporter and fundraiser for this program since Day One. Thank you for all of your support and contributions over the years. You are part of something great, and we all hope gene therapy is the answer to this cruel disorder.

Our work is not done, however, and we look forward to your continued support! Thank you!

Hoot hoot!

Last Day of School

From Kate:

Getty’s last day of school was on Thursday. Getty got the chance to go to her physical pre-school and see her friends and say, “Happy Summer” to all of her peers.

It was a beautiful day (hot and bright), but beautiful the same in the amount of memories that were created. I am not a mother of a healthy child. I don’t know what it means or feels to a mother who watches her daughter/son walk across the lawn to greet her pre-school teacher and to receive a certificate of completion (diploma). But I can tell you what it meant for me. I am taking the time to say in this manner because my assumption is that a pre-school ceremony is just one stepping stone to kindergarten, then first grade, etc. We were told Getty would not “make it to the age of two”, and that alone makes one realize that this day maybe might not have happened. So stating it in this manner is not to suggest this day was not precious for the other families, it was just different. SMA is cruel in so many ways and even though we give Getty every chance at an amazing life, there is no room for error on our end.

Unfortunately, Mark was not able to come, but I know I can speak for him when I explain this feeling. Before Getty received her certificate, her awesome teacher said sentences like, “we are so glad to have Getty here today.” She could have just stopped there, because that is seriously the only sentence that means the world to us. Getty is here. GETTY IS HERE! We are experiencing events in Getty’s life that we had no idea we would. We have never been doom and gloom and we seriously try very hard to keep the positive in the forefront. But man, did that sentence permeate through my heart.

As a family we also have hard days. Days that can really break a parent’s heart. But with Getty’s unconditional love and support from our family and friends, those moments are fleeting and sometimes are few and far between. So that perhaps simple sentence was both emotional and also a triumphant one.

Watching Getty receive her certificate was affirmation to me as a mother that, “yes, Getty IS doing this and we are loving this journey with her.”

Her teacher spent a few minutes talking to the group of parents about Getty and then she asked the kids how old Getty is and the entire class yelled 4! In my heart and mind, I also said 4 and I had a beautiful flashback of our time so far with Getty. I thought about birthdays, walks to the park, the sound of her giggles, the beautiful moments we have all shared as a family, then I flashed back to where I physically was. I had her hold her certificate and I caressed her hand as the class sang a few songs.

You know I dream of these moments with Getty. I don’t, take these events for granted and I know that our lives are fragile but firm with determination. But I tell you, Getty is a fighter and I know that next year, we will be at the same event and celebrating the completion of another grade level.

It was a very emotional day for me. Seeing all of the kids circle around Getty and welcome her in such a loving way was beautiful. The way in which they take great care to make sure she is involved is such a precious thing to be witness to.

But in true Getty form I could tell she could sense I was getting a bit over emotional and went “Getty” on me. It was clear that at some point in the celebration of certificates, the spotlight was not going to be on her anymore. She had sung the songs, she had received her certificate and so that meant, “let’s go!” Her heart rate increased, she started to whimper and so I looked over at Angie and my mom across the grass and mouthed, “we need to go.”  I swear Getty is a diva. If only I could hear and see the dialogue in her head, it clearly would have sounded like, “um…..ok this isn’t about me anymore, let’s go.”

We abided and we left mid ceremony. Listen, I am not going to battle with her. That wasn’t the moment to talk about “sharing”. 🙂

So here is to summer. Getty’s list of to do’s consist of the following.

Summer School

Zoo School

Walks to the duck pond

Trips to the ocean

Hanging out in jogging stroller as mom pushes the princess.

Experiencing life, love and happiness.

Whatcha Been Up To?

From Kate:

This Spring has brought a very busy little missy. As Getty gets older it seems as though more opportunities come her way. Pre-school, reading, talking, movies, ocean trip, swinging, power chairing, and everything but the kitchen sink.

Here is what we know she loves:

Pre-school: She loves the interaction and direct instruction with her teacher at home. She also loves the interaction she gets with the kids at her virtual school. Her vocabulary is increasing. When Getty speaks, she will use her syllables to make words. She is doing so great at it and it is helping her teachers understand her needs and/or to let them know how smart she is. Her eye gaze is grand. There is always choice in her instruction and Getty is really great at everything she does. She understands patterns, colors, letters, numbers, her environment, bugs, animals, etc. Every book that is read to her, she is locked in like glue. She is a great listener and she is patient when she wants to be. 🙂 Getty loves music and loves to listen to songs.

She goes into her virtual classroom everyday to see the kids and gather some social interaction with her class. The kids are very cute. They announce “Getty’s here!” and they offer copious amounts of hellos and then goodbyes at the end of the day. We stay for about 30 minutes to listen to story time or an activity during circle time. Next year the amount of time and the activities will be longer and more interactive. This year has definitely been a learning year for her teachers and myself. So next year we can all hit the ground running make the virtual aspect of Getty’s learning awesome.

Getty got to take part in her first “picture day”. It was so awesome to dress her up and take school pictures and a class picture. The kids were so excited to see her and the light beamed from her eyes. We think she thought the experience was pretty cool. Pictures just came back and she is just as sweet in print as she is in person. We are so glad that she was able to take part and have that real life school experience and so thankful that she had time to hang out with her classroom friends.

I am so thankful for Getty’s school district to offer direct instruction and virtual for her. It is helping her learn and grow leaps and bounds. I have really enjoyed the relationships that she has created with not only the kids in classroom but her teachers in and out of the house. They have all been so kind and generous with their time and love. Getty loves all of them and I enjoy more than anything to sit back behind them and watch each teacher interact with Getty. They have their special time together and it makes this mom’s heart warm.

The end of the year is coming soon and then she will hit the books again and have four weeks of summer school. I enrolled Getty into Zoo School as well. The Sacramento Zoo has a great pre-school program throughout the weeks of summer and Getty will be a certified Little Duckling. Can that sound any cuter? So excited for her to have new experiences and to meet new people.

Out and About: It has been difficult this spring to get out and explore, so most of our activities have been at home. We were able to get away briefly to Bodega Bay. Again brief, but memorable. We braved the wind and found a quiet spot at the beach. Cooper came along as well. The trip was fun. I hope that we can sneak in a few trips before summer is out.

Traveling is not easy. I guess I will just leave it at that. I will say this, it is not just throwing a couple pieces of luggage into a van and heading out. It is packing a small hospital and then some into a van. 🙂 Not easy but it will never deter us from exploring.

Home Fun: A lot of the fun has been at home. We have tried very hard to make Getty’s environment interactive and fun at home. Since most of our time is under this roof, heck we need to have a blast. Getty has been rockin it in her power chair. She is doing a great job of moving left and right. I have not given her the power to move forward yet. Getty will be fitted for her custom headrest soon and when that happens I will be more than willing to give her the keys to the forward switch. I have been playing games with her to make sure she knows when to stop and when to go. She is getting really good at it, however in pure 4 year old form, she will listen when she wants. When she decides not to listen I take a reward sticker away. She always gives me a grunt and look at me as if to say, “hey give that back!” A conversation ensues about why I took the sticker and how she needs to listen to me. Most of the time she will correct her behavior and sometimes she will literally turn and keep turning and not stop and giggle as she rebels again. I love her spunk!

We play dress up, we sing songs, we read books. We have started to read her higher level books for the sake of broadening her vocabulary and imagination. Last year I tried several times to see what she would do if she had to listen to a book without pictures. Ummm she didn’t like it. So I tried again this year and she loved it. Her attention to the story was amazing to experience.

So far we have read:

Charlotte’s Web

James and the Giant Peach

Matilda

I think I have purchased all of Roald Dahl’s books so far. She loves the silly stories. I incorporated each book with paper puppets of each character. I thought while they speak, Getty might enjoy seeing them talk. Perhaps that would help enhance her experience and interest. So far so good. I have failed to put up the Matilda as she was speaking one day and Getty growled at me like a tiger. So I don’t make that mistake anymore. Hehe!

She loves reading and listening to books. So proud of her.

She plays with bubbles, she paints, she giggles, she bakes and now she swings. A great friend made Getty her own custom swing. She lays flat and swings to her heart’s content. It is very cool and it is just one more aspect of making home a place of absolute delight.

Next up for this spring/summer:

Baseball

Accessible Playground

More bird watching. Another birder in the house, yahoo!

Get going in the jogging stroller

Go to a Sacramento Republic soccer game

World Cup 2014-Watch and cheer on USA and England!!!!!

Books, books, books!

Overall: Getty’s health has remained rockin! She has been on bi–pap a bit more than before. The good thing is that it is out of germ necessity, not diminishing lung capacity. Diet is spot on and going well. Minor tweaks here and there. Her blood work is staying within average ranges. We are simply blessed to have such a happy kiddo who continues to kick SMA in a beeeeehind!

She is a little over 37 pounds and over 43 inches. We call her Getty, Spaghetti, Goosie, Chicken Soup, Babe, Little Lady and now our little Beast. 🙂

We are so proud of our little owl! You keep hooting and hollering and fighting SMA. So far Getty, you are doing a bang up job and showing SMA that you are living and loving life regardless of diagnosis.

I have been reading Getty Shel Silverstein lately and I came across a poem that I know I read as a child, but it serves such an amazing purpose now. I think it helps put so many things in perspective in our new normal.

Listen To The Mustn’ts

Listen to the MUSTN’TS, child

Listen to the DON’TS

Listen to the SHOULDN’TS

The IMPOSSIBLES, the WONT”S

Listen to the NEVER HAVES

Then listen close to me-

Anything can happen, child

ANYTHING can be.

I truly feel like Getty gets that. She knows that life is worth living and it is pretty cool. We love it as well.

Memorial Day

From Mark:

We always honor SMA warriors: children, families, friends, and allies determined to fight spinal muscular atrophy, the #1 generic killer of young children. They soldier daily to provide a quality of life that would be impossible otherwise. Sadly, far too many SMA warriors fall and suffer years of potential life lost.

Today, we honor fallen soldiers who paid the ultimate sacrifice to defend our nation and help bring about a more perfect union. They pledged their lives, fortunes, and sacred honor to deliver liberty and prosperity to our land.

Through their loss, society as a whole gains. People advance themselves, their families, their careers, and the lives of others in peace thanks to the soldiers enabling it all.

In our world, Getty and other SMA families have their immediate medical and nutritional needs met through medical advances in clinical care as scientists toil for a viable SMA treatment or cure. We thank them for their work and sacrifices and the more fundamental work and sacrifices of the soldiers who created the environment in which these advances can occur.

We also pay special homage to Getty’s cousin Travis Woods, who paid the ultimate sacrifice in this cause. We love and miss Travis dearly and know he would be just as proud of Getty as we are of him. He is our special hero.

We remember. Thank you.

SF Marathon is 95% full, but there is still time to sign up to be a TEAM GETTY Runner!

From Kate:

I just got notified by the SF Marathon that the registration of the race is 95% full. However for anyone interested in being a part of our TEAM GETTY runners, you are in luck! We have some space left for you.

Here are all the details:

Date: July 27th, 2014

Where: San Francisco, California

Distance: Half Marathon and Marathon 

Price: Marathon $165

            Half Marathon $120 

Registration: Is through Getty Owl Foundation,  NOT the official SF Marathon website. So please call us at 916-476-3977 or email us at hoot@gettyowl.org 

What to wear?: TEAM GETTY tech shirts are complimentary to all team members and they are RAD! 

So if you are interested or you know someone interested, spread the good word. Our team is getting bigger as the days get closer to race day. It feels great to know we will have some great Getty Owl Foundation presence on race day. I cannot wait to be a part of this great day.