Hello, my name is Hudson and I was born with an ultra rare genetic condition called Gould Syndrome! With only 850 cases known worldwide I’m more than 1 in a million, I’m actually 1 in 9.4 million!
Because of my condition I suffered a massive stroke in the womb which ended up stopping my brain from fully forming which has made many things a challenge for me. When I was around 1 month old I started having seizures which I still have to this day. At 11 months old we found I had cataracts in both eyes and even though I was able to get them removed I am still legally blind. I have a severe case of cerebral palsy from my stroke so I have to work everyday to keep up my strength. I have therapies nearly every day and many doctors appointments to help me stay strong and keep an eye on any new complications that may arise.
Despite the doctors saying I wouldn’t make it 2 hours I fought and have just turned 2 years old! Even with everything going on I remain a happy boy and my parents say I bring them lots of joy! I enjoy cuddles, music, textures and most recently I got a wheelchair and it makes me excited that I get to be in an upright position! My head is very heavy and my chair gives me the support I need to feel the world around me. Unfortunately my wheelchair doesn’t fit into our current car and it is difficult to take apart and squeeze into the trunk and I don’t get to ride around in a position that’s good for my body.
Gould Syndrome is so rare that no doctors around me know about it. Luckily there are two places in the United States with specialists in my condition that would be willing to see me but they are in San Francisco, California and Boston, Massachusetts and I am in Texas. I’m hoping I can raise some funds to help with getting a handicap accessible vehicle, medical expenses from the last two years, and travel to these specialists so I can get the best care and to help them learn more about Gould Syndrome!
I appreciate everyone’s support and ask for continued prayers as I continue to fight everyday and work hard to get stronger.
