Jack is one of only 16 children in the world with a life-limiting genetic condition that is so rare it doesn't have a name.
The 11-month-old has a mutation of the PPFIBP1 gene which means he is blind, has frequent seizures and is unlikely to ever walk or talk.
His mum and dad want to track down the parents of the other children with his condition to better understand their son's diagnosis and offer support.
"It is very limited with what they can tell us," said his mum Amanda Thomas from St Athan, Vale of Glamorgan.
"But what they have said is it is life-limiting and it is likely that he will pass away at some point during childhood but they don't know when that will be."
