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HELLO! MY NAME IS LEO
and this is my story....
My name is Emilio but everyone calls me Leo. I am 2 years old!
I was the first child in the UK to be diagnosed and the inspiration for this charity.
The TBCD gene mutation affects my brain, central nervous system and my muscles. As a result I have epileptic seizures and low muscle tone, which means I have difficulty moving and breathing.
Please share and follow my story as my family and I journey through the unknowns. My TikTok is A Life For Leo
Hi, I'm Landon!
I’m six years old living in Columbus, Ohio, and the greatest big brother you’ll ever meet! Just before my 2nd birthday, I was diagnosed with an extremely rare genetic disorder caused by a genetic mutation in the TBCD gene. There is no name for such a rare disease, and no viable treatment. Follow my Land On A Cure journey.
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.
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.
Please share my Go Fund Me.
Hi, I’m Petru!
I was born in 2016 and until I was 6 months old none of my health professionals suspected that something might be wrong with my development. However, starting with 6 months old I began to fall behind in all my milestones.
After 5 years and a half and countless medical investigations, I was diagnosed with an ultra rare genetic disorder caused by a mutation in the TBCD gene. This is a neurodegenerative condition without any treatment and with a life expectancy of only a few years.
Please support us to find a cure for TBCD!
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