On January 20th, 2012, my sister Dakota and her husband TJ welcomed a bright eyed bundle of joy into the world. Baby Thomas was quickly surrounded by his grandparents, aunt and uncle, and family friends. He was perfect. There wasn’t a dry eye in the room. From the moment he was born we all knew he was special.
Fast forward seven short weeks and we arrive at the moment where all of our lives changed. Thomas didn’t move very much and he barely cried, even when he did cry it was very soft and you could barely hear it. A family friend noticed that he breathed oddly and at his recommendation Thomas’s Mommy brought it up at his next checkup. They were immediately admitted to Children’s Memorial Herman Hospital in Houston, Texas to run tests. Before the doctors even told us we’d done enough research to know that he had Spinal Muscular Atrophy, SMA for short, which means he’s missing the gene that tells his muscles to grow. When the diagnosis came our family was told he’d live to be just 18 months to two years old.
I always hated my sister’s stubbornness when we were kids; it just about drove me crazy. But when she was faced with this daunting situation I couldn’t help but admire her for her refusal to give up on her son. We all did research online and found an enormous community of families who have been effected by SMA. Imagine the joy we felt when we discovered that there were kids with the same diagnosis as Thomas who were 5, 6, 10, 15, even 18 years old! There are even some who aren’t kids anymore, who are adults with children of their own! That settled it, we weren’t going to sit back while he struggled for every breath; instead we would do anything and everything possible to help this beautiful baby LIVE with SMA.
Thomas will be 9 months old on October 20th. His everyday life is not the same as it is for most other babies. He has nurses 20 hours each day who help out. He has a feeding tube port in his belly so he is able to eat because his swallow ability has been affected by his disease. From 9 AM-9 PM he has to be hooked up to his feeding pump every three hours, then from 11 PM-7 AM he is on continuous feeds. Thomas also has a bi-pap ventilator machine that helps him breathe and he is always on a pulse-ox monitor so we can watch that his oxygen saturation and heartbeat are in normal ranges. He has to be suctioned regularly because he isn’t strong enough to cough and receives chest percussion therapy every 2-3 hours to help break up the natural lung secretions that build up that babies without his diagnosis would have no problem clearing. At this point a baby without disabilities would be standing and starting to walk and Thomas can’t even crawl. He can’t pick up his toys, roll over, sit up, or even hold his head up for very long. He can’t move his legs above the ankle and barely uses his arms. For Thomas to play we have to hold his arms and position them to hold his toys. For him to exercise we have to move his little legs and stretch his arms. He can’t spend much time at all on his tummy because his neck muscles are so weak.
Despite all of these things he is unable to do, though, Thomas can still feel everything. His mind is perfectly normal. He likes Sesame Street and toys that make noises and he loves bubbles. We’ve even figured out a way that he can use his bi-pap mask to blow bubbles himself, and boy does he love it. We don’t know if he will be able to talk much as he gets older and his muscles grow even weaker, but he recently said his first word, “Dada,” and when we move his chin up and down he can make different sounds.
This may sound like a lot to some people, but we don’t mind the extra work. It’s more than worth it to be able to see his beautiful smile and hear his tiny laugh.
Now, in order for Thomas to outlive the lifespan given at diagnosis he will need a level of care that exceeds even what his insurance will cover. The first couple of years of his life will likely be spent in and out of hospitals, and while his care and everything will be taken care of, there are quite a few things that won’t. For example, Dakota stays with Thomas for nearly every minute that he is in the hospital, and parking alone costs $16 each day. She also has to rely on the hospital cafeteria for most of her meals, which gets pretty costly. Last time Thomas had an extended hospital stay it was for nearly a month and parking alone cost her over $400.
Insurance won’t cover things like adaptive toys that make it possible for him to play or extra bi-pap masks in case one wears out. It also won’t pay to make the family’s home handicapped accessible. He will need special positioners to make sure he doesn’t have too much pressure on his joints and expensive covers to prevent pressure sores from forming. Once he is a little older he will need an iPad with special apps to help him communicate his needs.
There are so many things that will be needed between now and Thomas’s third birthday that they simply can’t afford it all. I’m asking that you make a small donation and forward this to your friends so that we can all work together to ensure my nephew gets to live the long and happy life he deserves. We all love him so much and even at his young age he has touched so many lives.
Donating to our cause will mean that this little family doesn’t have to worry about whether they’ll be able to afford to stay with Thomas in the hospital, or if he will run out of supplies, or if he’ll have the toys and equipment that are essential for his development.
If you cannot donate then I have a few requests for you:
1.) Spread the word about this campaign to your friends on Facebook, Twitter, and in real life. The more people who know, the more who will be able to help.
2.) Get tested to see if you are a carrier for SMA. It’s estimated that 1 in 40 people are carriers, possibly even more.
3.) Get educated about SMA, the #1 genetic killer of children under 2. A simple internet search will show you a multitude of websites dedicated to the subject.
4.) Follow Team Thomas-Fighting SMA on Facebook.
Thank you for taking the time to read Thomas’s story, I hope that he has touched your heart just as he has touched so many others!