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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

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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.

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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.


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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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