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Watch Out CIM, Team Getty Is Here!

From Kate:

CIM stands for California International Marathon. As in 26.2 miles of pure sweat and asphalt. On this Sunday, December 4th a group of dedicated Team Getty Runners will be taking on what I would consider one of the most incredible challenges in life, a marathon.

This incredible group has been training for the past year to get ready for this day. They have entered races throughout the year, wearing their Team Getty shirts proudly and doing their best to spread SMA awareness as they run each mile.

Mark, Getty, and I say thank you. We thank you all for making this commitment. We thank you for coming aboard to help us fight SMA. Thank you for taking time from your own busy lives and families to train for this enormous race. Thank you, thank you, thank you.

We thank you all  for helping raise money on Crowdrise. Because of you, we are able to put these funds towards the Gene Therapy Program. We thank all of the donors as well. Thank you for believing in each Team Getty Runner to help sponsor them. Everyone’s support has been so humbling.

We want to thank Morgan for getting this team together back in January. You have been such a huge supporter and best big sissy to Miss Getty. Thank you for organizing this very special group who will be running proudly for Getty and for Getty Owl Foundation on Sunday.

For those that will be participating or observing the race, look out for our sea of blue Team Getty shirts. Give them a hoot! Odds are they will hoot back and tell you a little about why you should know more about the #1 genetic killer of young children.

So to our amazing Team Getty members, we say thank you. Get lots of rest, lots of water and carbs. And remember that we support you and hope that our good vibes will help you run swifter and lighter. And remember, “We kick ours to kick SMA’s”





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Counting Our Many Blessings

From Kate:

What better day than today to rejoice about Thanksgiving yesterday as well as to celebrate Getty’s 20 month birthday. As all kids do, they age and get older. You think about all the clothes they have grown out of, the toys they played with, and you say to yourself, “where did the time go?” I find myself doing that a lot lately. How on earth is Getty already 20 months old?

I think sometimes even in our situation we can also take life for granted. We work so hard to keep Getty healthy that I think sometimes we forget that she is growing into a little lady before our eyes. Last night I had to catch my breath when I looked into her eyes. I was just so overwhelmed by how Getty is maturing and I was just in awe of her beauty and her grace.

Last night we celebrated with my parents, Mark, Getty, and our houseful of animal friends. We opted for an Italian Thanksgiving this year, which means raviolis and all the fixings. It was a very nice and relaxing night. I thank my mom for taking on ALL of the cooking. Mark nor I had the energy to do really anything culinary. So raviolis, salad, antipasti, bread, etc. It tasted amazing!

We were all eating at the table, except for the animals, well no I take that back, Cooper was also with us under the table waiting patiently for something, anything to drop on the floor.

Getty was wearing her new dress and her new haircut. She looked so very cute. We put Getty in the stroller and she was positioned between Mark and I. Everyone dug in. Getty and I kind of shared dinner as we went. I would eat a piece of food and give her a little of it to feel and to smell and then if she was up for it, I would put the item next to her mouth to feel with her lips and tongue. Without fail every piece of food I would give her, she would immediately wince. Her whole face would pucker up as if to say, “what the HELL is this?” And then within a second or so, her eyes would get big and she would show so much joy in the new texture she was touching.

So let’s see, food she did like to hold was the slimy ravioli. She was not quite sure what to make of the chickpea and the kidney bean. She enjoyed crunching on a piece of celery. Her four front teeth made some tremendous bite marks in several vegetables. I was hesitant to give her a piece of raw broccoli. For some reason I thought she would reject it immediately, boy was I wrong.

I put it in her hands and moved her hand towards her mouth. Again, she winced, but when she felt it with her mouth, she was in heaven. She loved the texture and would move the broccoli all around her mouth. It was so much fun to be interacting with her in this way. All four of us were having a great time watching her explore her world. Then came the olives.

She had so much fun moving her fingers back and forth and watching the olives move about. After a few minutes I would swoop in and eat each olive one by one. You could just see her brain working and literally subtracting as I ate another. Just as fast as I ate them, I replaced them with new shiny olives on her little fingers. I believe most of my dinner consisted of olives, raviolis, vegetables, and not much else. My plate was from Getty’s hand or fingers.

Getty had so much fun “playing” with her food. We all had a great time interacting with her the entire time. She was so chatty the entire time and I don’t know how else to explain it, only to say, it will always be a great memory for our family.

After dinner we all just kind of hug out and enjoyed each others company. We couldn’t help but reflect on the year prior. We had just made it home in time to celebrate Thanksgiving after Getty was in the hospital for her g-tube placement. Lots of new changes that now just feel routine. Lots of unknowns that are so clear now. What a difference a year makes.

Every day we count our blessings. Life is so incredibly precious and having Getty with us for another Thanksgiving just makes life that much better, we hope and know that there are more to come.

I have always been enamored with Elanor Roosevelt. I came across this quote and thought it was very  appropriate.

“The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences.”

Thank you Getty for continuing to teach us your wisdom.


Thanksgiving 2011

From Mark:

Blue skies and summer heat slowly give way to brisk breezes, mild chills, and golden trees. The rains come as the winter draws near. It’s nice and mild outside, and it’s equally nice inside. Family joys and football cheers fill the air.  Kate and I were married in Portland in the fall. It was cool, damp, and gorgeous. Autumn is definitely the most perfect of seasons.

These days, fall takes on an entirely new meaning for us than it has in years past. It is still a time recall a forgotten appreciation for warm blankets and the Great Pumpkin, but it is also a time to raise our defenses, keep diligent watch, brace ourselves for siege, and wage war against illness. We harvest extra hand sanitizer, exam gloves, Synagis, and vitamins. We review and revise our sick protocols and work to ensure disease is not lurking in the shadows lengthening over our home.

We are not germaphobic for its own sake. With SMA, when your child cannot cough, cannot swallow, cannot breathe a good part of the day without support, and can barely sneeze, lockdown becomes a matter of survival.

While we must be better equipped to manage SMA in the fall, SMA has better equipped us to appreciate those things in life often taken for granted. What better time than fall to stop for a moment and consider that for which we are thankful?

We are thankful for our family. SMA is not easy. It requires a lot of time, energy, diligence, and advocacy. As we fight to maintain Getty’s health today, we must also fight for things she will need in the future. As soon as we encounter and overcome one battle, we must move immediately to the next battle. Through it all, we hold together as a family and work to be the best parents possible. When the day is done, the doctors have gone home to escape our persistent advocacy, and the evening respiratory treatment is complete, we spend time together as a family. We read, sing, relax, and simply enjoy our time together.

We are also grateful for our extended family. They give us love and moral support, help us achieve things we could not achieve without them, provide us respite, help us with housework, entertain Miss Getty, give hugs, and lend their ears. Thank you.

We are grateful for our friends. There are some truly wonderful people in this world who have given so much of themselves to love and support our family, especially in our times of greatest need. They didn’t have to do anything, and we didn’t ask or expect them to, but they did and they continue to do so. We are awed by their kindness and generosity. Our wonderful friends help us with our daily lives, provide us inspiration and encouragement, volunteer their time and effort, and open their hearts and souls to us. They do everything from bringing us food when Getty was in the hospital to just making sure Kate and I get out of the house now and then. Only one of us can get out at a time, we each cherish those hours here and there when we can grab a drink, enjoy a good meal, and just breathe for a little while. We truly appreciate our wonderful friends. Thank you.

We are grateful for our health. I know that statement drips with irony. Kate and I have the physical capacity and fortitude to help Getty. Given SMA, Getty is a happy and healthy little lady. Her lungs are clear, her nutrition is good, and her mind is sharp. She smiles, hoots, and giggles all day long. She loves her shows, music, books, iPad, slings, toys, animal brothers and sisters, and most of all, spending time with Mom and Dad. Special thanks goes out to all of Getty’s medical team, without whom Getty would not be where she is today; thank you for listening and being open minded about exploring new avenues in SMA.

We are grateful for the SMA community. They are a tremendous group of knowledgeable, strong, loving, devoted, supportive, and compassionate people. The SMA community really is a global family, without question. They have supported and taught us so much, from medical know-how to simply coping with SMA. When we got Getty’s diagnosis, we were shocked, sad, scared, and devastated. As they struggle to manage the crushing realities of SMA in their own lives, they offer wisdom, advice, inspiration, courage, and hope to others.  We, in turn, started the foundation to give back to them, to fight for a cure, and to share our knowledge, experience, and resources with newly diagnosed and other SMA families. Thanks to a handful of doctors who have devoted much of their practices to SMA and the families who help create and share best practices, the natural history of SMA is being rewritten, and the two-year average life expectancy associated with SMA is being thrown out the window.

Personally, I am grateful to have Kate in my life. SMA comes with more than its share of hardships. On top of everything else life throws at us, we have had to learn to be our own doctors, nurses, and respiratory therapists. Getty has been admitted to the hospital for surgery and for sickness. We have seen too many families suffer and grieve with the loss of a child. We have witnessed families shattered by SMA. We see too many families struggle for answers and children, for help. Through the exhaustion and emotional toll, Kate has never failed to do right as to Getty and to do everything possible for our family. When she could easily justify time to herself, she finds the time and energy to give her love and support not only to Getty and I but also to the Foundation and to fellow SMA families. Kate is truly a remarkable and loving person, and I am grateful to have her as my wife and Getty’s mother.

People are facing so many challenges in these times and have plenty to be upset about. I encourage you to embrace the autumn and the ones you love; take a few moments to consider and celebrate those things for which you are grateful. Cheers!


An Unscientific Opinion

From Kate:

November 12th was World Pneumonia Awareness Day. I read an article about how children are dying at alarming rates due to pneumonia and it brought back some lingering thoughts I have always had since Getty’s diagnosis. I know that many third world countries are suffering and need vital support to combat pneumonia, but I also wonder if it possible that more SMA children are out there but are not diagnosed in time.

Since truly digesting Spinal Muscular Atrophy, as a mother, I tried to really find some kind of clarity. I needed to know why I had never heard of this disease. I needed to be convinced that Getty was not just victim to a “orphan” disease. I needed to figure out why awareness of this horrible disease is lacking nationwide. When I start sleuthing, I didn’t stop until I was satisfied. So in my unscientific opinion this is what I came to.

I think there is more SMA in the world than we realize. I can’t help but think if children were accurately diagnosed then perhaps there would be a bigger urgency on a government or national level to find a viable treatment or cure.

Let me give two scenarios that stick in my head that I believe, again unscientifically, might actually be a misdiagnosed case of SMA.

1) Getty was diagnosed when she was 4 months old. She has always been a very healthy and robust child. Let’s say, hypothetically, before her diagnosis she got sick and it turned into an aggressive upper respiratory pneumonia. Mark and I would of taken her to the hospital and let the doctors do all they could to get her “through the woods”.  Let’s say they were unsuccessful. For whatever reason the pneumonia was too much to handle. Getty would have passed due to pneumonia. I can tell you beyond a shadow of a doubt, the conversation in the hospital would not have evolved into a discussion about genetic diseases and Spinal Muscular Atrophy. We never would have known that SMA was the catalyst to aspiration pneumonia. We would have gone on with life without even realizing that we were both carriers of the #1 genetic killer of young children.

2) Since Getty was diagnosed at 4 months, with me as new mother stumbling through parenthood, I could have accidentally suffocated her. Sudden Infant Death Syndrome (SIDS), from what I have learned, is still an unexplainable sudden death of a child. So what does this have to do with Getty?  We know SMA restricts lung capacity of children, so they rely heavily on the diaphragm to breathe. So let’s just say, hypothetically, I left Getty to sleep on her tummy in her crib before her SMA diagnosis and before she got a pulse oximeter to monitor her vitals at all times. We would have never known if her oxygen levels dropped and doctors may have attributed it to SIDS. Again we would have never known that SMA was the catalyst for her passing.

I am not trying to suggest that all cases of infant pneumonia or SIDS is to unidentified SMA child, but can you see how in some cases it might? These are just my unscientific thoughts, but I figured it was something to at least throw out there for discussion.

I wonder if children were diagnosed with SMA earlier and if there was more awareness, perhaps we would see a bigger push for treatment and cure of the #1 genetic killer of young children. Perhaps people would be aware that they have a 1 in 40 chance of being a carrier. Perhaps SMA would no longer be considered an “orphan” disease. Perhaps SMA would be cured.


Move Over Mom and Dad, I Am Watching Sesame Street!

From Kate:

With any toddler, I would guess that there are just not enough minutes in the day. Feeding, napping, “school”, reading, play time, bath, music, etc. Fitting everything in never seems to be in the cards.

Since Getty is getting older, I am trying to really find engaging things she enjoys. Before, playtime was more of a mom based decision. I would do activities her based on what I thought she would enjoy. As long as I didn’t hear any noises to tell me otherwise, I just assumed Getty was enjoying it. She does a very good job of non-verbally telling Mark or I when she likes and doesn’t like something for the most part. Sometimes it is seriously apparent when she doesn’t like something. She will pucker her whole face up and start to cry. It isn’t what I would call a real cry, more of a “Getty” cry. “Don’t make me step this up a notch”, kind of cry. 🙂

So as she has gotten older, I think in some ways she is growing out of some of the things we do, but that is the hardest thing to judge. I try to do activities with her that are at age level, but I am finding that she is literally bored doing them. Take last night for instance. We have animal flash cards to help her recognize and learn her animals. We are also working on her eye gaze skills, so as she develops, she can use her eyes to tell us what her needs are. A slow and steady process indeed, but will be so beneficial for all of us in the near future.

Okay so the flash cards. I would hold one up at a time and say the word as she is looking at the card. Then I would take two different cards and have her pick with her eyes, which animal I am asking for her to look at. I’ll just say this much. She knows how to do it, but she takes to another level, she gives me the teenager eye roll as if to say, “The cow is on the left, duh!” So instead of stopping, I continue through the activity and quickly move onto something more challenging before the sassiness escalates.

The books we read to Getty are also not age appropriate, it just seems as though her brain, while not at all affected by SMA, is working overtime and this mom needs to catch up. 🙂

Which leads me to Sesame Street.

Mark and I cut off our cable about two years ago. It just wasn’t worth the money and we were finding that we weren’t really watching much TV anyway. We recently got it back, not quite sure why, but it has been nice to have some extra channels, so after Getty is sleeping, we can kind of veg out for a little.

Well we found out that we have this feature called On Demand. 🙂 I know we are a little late. But anyway, the “Kids” feature is terrific. I was flipping through the shows and stumbled upon Sesame Street. My ears perked up and I thought, “well maybe Getty might like this, but is she old enough to understand and enjoy it?” Um………yep!

I turned it on and I am not kidding you, she instantly perked up. She laughed with such great timing. She was instantly engaged with the letter of the day, which ended up being the letter “O”, no kidding. And wouldn’t you know it, the first word was an animal named, “owl”. This couldn’t be any better.

Getty enjoys the characters, the constant singing and the quick snippets of number and letter learning. She also likes the classics, which makes Mark and I happy.

So now we have found something new, something challenging in her daily routine, and something that we can all take part in … or at least I thought. You see when Sesame Street is on, well, Sesame Street is on! Mom and Dad don’t seem to exist. Which you know is kind of a good thing right now. It has been difficult to find ways for Getty to be completely independent.

She has her iPad and her arm slings to manipulate the tablet. She has a really cool mirror that plays music to her and teaches her colors. She can do art on her own, again with the help of arm slings. Music she loves, but we are usually doing that together. She loves playing with musical instruments, and we are playing together as a family. Again it is always nice to see her have some independent time on her own, where I am not totally up in her “grill”.

So last night we watched Sesame Street together. I asked her if she was enjoying herself and she gave me the teenager eye roll, but this time is was different. It wasn’t a “this is so boring” look, it was more of a……” Mom! I am watching Sesame Street!” And that felt awesome!

Oh and if you were wondering what monsters she likes so far, it seems as though Super Grover and Elmo have her heart right now. 🙂