A mother says that her baby has a health condition so rare that it doesn’t even have a name.

Amanda Thomas, 35, from Glamorgan in Wales, is the mother to one-year-old Jack, who lives with a condition that has no cure.

Doctors told Amanda her son had a mutation of PPFIBP1, a gene that acts as an instruction map for nerve cells in the brain and nervous system.

He is one of 16 other known cases worldwide.

They also warned Jack may only have one year left to live and he could soon be unable to sit, talk or walk.

The mutation can also cause microcephaly, a condition where a baby is born with a head that is smaller than usual. Jack is now blind and lives with frequent, drug-resistant seizures, which Amanda described as ‘heartbreaking’.

‘No parent wants to be told that they will outlive the

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