Max's Miracle: Searching for a Cure for TBCD
To follow Max's story, visit us on TikTok at @miracleformax, or on Facebook at A Miracle For Max.
This is Max. When he was born, everything was perfect. Our happy little boy was a dream come true, and we had no reason to suspect that anything was wrong.
By ten months, we realized he still hadn't learned to sit. He couldn't figure out how to swallow solids. Something was off. We began our journey to figure out why sweet Max was struggling to hit basic milestones.
At 16 months old, we received his devastating diagnosis - TBCD disorder, a fatal neurological condition with a life expectancy of only a few years and no known treatment. Our hearts were broken.
Our only hope is a longshot: to generate enough funding privately to find a cure.
There's still hope for him if a treatment can be found quickly. He's currently attentive, social, mobile, verbal, and his brain damage from the condition so far is relatively minor. Once brain tissue is lost, it's almost impossible to retrieve, so time is brain for Max, and we are fighting the clock every day.
What is TBCD Disorder?
- TBCD disorder is a genetic disorder that is neurodegenerative and fatal.
- Most kids lose all purposeful movement by age 4, and the majority die by age 5. There's currently no treatment or cure.
- TBCD disorder is extremely rare. Less than twenty children have been diagnosed. Only a handful are alive today. It's called an "orphan disease" because it's too rare to generate scientific or pharmaceutical interest.
How will my donation be used?
- Donations will be used toward medical research for Max. Bespoke treatments for orphan diseases are outrageously expensive (in the hundreds of thousands or even millions of dollars) and are not covered by insurance.
- The gene therapy being worked on at Nationwide Children's Hospital will require about $2,000,000 in funding.
- Orphan diseases are often passed over for research by investors, academics, and private and federal grants alike because time and money flow toward causes with large communities. The message has been very clear: unless we fund the money ourselves, we're on our own. Unfortunately, we're not wealthy.
- Because TBCD is a monogenic disease, any breakthroughs or discoveries made for Max are likely to benefit other children with TBCD. We pledge to keep an open line of communication with all TBCD parents and researchers and to share any information we find with anyone else affected.
How can I help?
Every dollar helps.
Are you affiliated with an organization that might be able to help? Restaurants, stores, museums, and public attractions can all fundraise very effectively with lightweight campaigns.
Spread the word
No money or time? That's okay. Can you spread the word? Follow our story on social media. Put us in touch with any media contacts you might have. Share our posts. Tell your friends. Stick one of our stickers on something. Literally anything helps.
Are you a doctor or genetic researcher interested in a case study? Are you working on something potentially applicable? We would LOVE to meet with you.
Please contact helena with any inquiries.
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