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#miraclemaxim #becauseimworthit
At just 5 months old, our baby Max was diagnosed with a rare seizure disorder called Infantile Spasms (IS) caused by bilateral perisylvian polymicrogyria (extensive structural abnormalities in his brain). Due to these brain differences, we have also received a diagnosis of mild Cerebral Palsy (CP). Recently, our family underwent extensive & costly genetic testing to learn exactly what was wrong with Max (so we could potentially find a treatment or cure). We learned that Max has a genetic abnormality & finally identified a causal diagnosis: DYNC1H1-related disorder.
There have been less than 300 documented cases of this condition in the world. And of those, ZERO have Max’s specific DNA misspelling. Max is literally the only known person on earth & in recorded medical history with his exact condition. While he has so far avoided some of the most serious complications of this disorder, Max faces much higher risk of developing spinal muscular atrophy with lower extremity predisposition (SMA-LED). Despite showing no signs today, over time Max’s legs could weaken, atrophy, & he could end up paralyzed from the waist down. For the rest of his life, because of his other diagnoses, Max is also at substantial risk of suffering more infantile spasms, developing new types of seizures &/or lifelong epilepsy, & developmental delays.
The effects of Max’s seizures are cumulative - the more seizures he has, the more damage to his brain. So the most important step was to first stop his infantile spasms. We are so grateful for the generous support of family, friends, & strangers - with just a 4-week medication plan, Max is currently in remission from spasms. And many of his conditions are treatable with specialists & ongoing care plans. But they will require early interventions & costly therapies, which we have begun already. We have been told to prepare for a lifetime of high-cost care for Max, as his special & medical needs are significant.
My husband is a 100% permanent & total disabled combat veteran. I have spent my entire career in nonprofit. We are not people of enormous means, so facing these expenses while battling Max’s serious conditions has been utterly overwhelming. But Max is a fighter, & we are determined to give him the best chance possible. We’re very grateful for every contribution - each one helps Max.
To ensure Max has access to whatever care he needs, we still need your help. This is going to be a long, long road for our beautiful, amazing, brave boy. But he is the picture of joy & resilience - I want to be like him when I grow up. He has an enormous circle of love & support, & God is with him (& us) every step of the way. We have an INCREDIBLE team at UVA Children’s Hospital & UVA Augusta Pediatrics, & we are forever in their debt.
We are genuinely grateful for your help with whatever you can give. Even a small amount adds up! Your gift helps us keep Max on the road to recovery, & it helps us focus on his care instead of worrying how our family’s (or Max’s 6 year old brother’s) future will be impacted. PLEASE ALSO SHARE THIS FUNDRAISER WITH THE HASHTAG #miraclemaxim. Giving Max a chance to go viral will raise the most funds possible for his lifetime of care.
We appreciate your continued prayers for us, & we ask you to please pray for every other family struggling with serious childhood illness. They are ALL going through hell. They are ALL exhausted. And NONE OF THEM should have to fight anything other than the illness their child is suffering from. We’re fighting because Max is worth it. They’re ALL worth it.
We send a heartfelt thank you to EVERYONE who has overwhelmed us with love & support.
Sincerely,
Max (& Tracy & Justin & Eli)
For tax purposes: No goods or services are exchanged for gifts given here.