Brian smiles during meals again
In August 2014, our three-year-old son, Brian, was diagnosed with a rare genetic disease, Ataxia-Telangiectasia. A-T is a progressive disease that is ultimately terminal. What is A-T? Imagine a disease that combines the worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, immune deficiencies, and cancer. Children with A-T are usually confined to wheelchairs by age 10 and often do not survive their teens. Because A-T is a multi-system disease, scientists believe that A-T research will help more prevalent diseases such as Alzheimer's, Parkinson's, AIDS, and cancer. See more at: atcp.org/hopeforbrian
Over the past few months eating has become increasingly difficult for Brian for many reasons. His body is often exhausted by simple activities; sitting in a chair while supporting his body and holding it steady, all while simultaneously trying to chew is ultimately too much for him to tolerate. This has made mealtimes very stressful for Brian and for our family. We have tried to find ways to support his body while eating. We've attempted the use of almost every booster seat on the market, however they never provide the back, trunk, and leg support that he needs. He begins to complain of leg cramps and exhaustion after a mere few minutes at the table. We have had to also purchase a child-size table for our dining room for the time being, which doesn't provide him the support to his back or trunk, but it at least allows him to stabilize his body with his legs firm on the floor. The downside to this is that Brian is still not receiving the support that he needs, so that he can focus on chewing. (Often we all take simple tasks like chewing for granted, but it is actually a very complex and exhausting task when you are in Brian's situation). The other downside to the child-size table is that Brian is no longer sitting and enjoying a meal with his family. He is off to the side and excluded. As a mother, this has been quite difficult and upsetting.
The months and weeks have passed, with no success and no relief. We have taken Brian for swallow studies, which have informed us that he is in fact having physical difficulties with chewing and swallowing. This will only worsen over time. Brian has begun struggling so much with eating, that he also vomits at times while attempting to chew his meal. I just desperately want to fix this for him. Eating should not have to be so physically and emotionally draining, especially for a four-year-old!
I finally felt like some help was in sight when I was connected with you and your team at Adaptive Design. I finally felt like there was something that could help Brian. A chair for our dinner table so we can eat as a family. A chair for our dinner table that will provide Brian with the support to his back, trunk, and legs and allow him to focus his energy on eating. With all my heart I hope that this makes Brian more comfortable and allows him to eat and chew without vomit, tears, exhaustion, and leg cramps. This chair will potentially change Brian's life. I cannot put into words how thankful I am to Adaptive Design. You have taken the time to learn about my son and create something amazing and life-changing for him. With any luck, we will be able to keep the feeding tube out of our lives for quite some time. I can't wait to bring this Ninja Turtle chair home and watch Brian smile during meals again.
Lauren Domitrovits
Parent
