Going Live!! Please continue to spread Leos story!
Tonight, we matched. #bettertogether #spreadlikewildfire #TBCDgene
and this is my story....
My name is Emilio but everyone calls me Leo, I am 1!
I was born with an ultra rare genetic disorder that affects my TBCD gene. My condition is so rare I was the 16th child in the world wide have been diagnosed with this degenerative neurological disease.
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 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!