There is no doubt that caring for a baby is a challenging experience – but one which is also cherished by proud parents.

Imagine though, caring for a 15-year-old baby.

That, effectively, is what the family of Toby Williamson are faced with every day at their home in Alcester, Warwickshire.

Toby was born full term after a normal pregnancy, but it soon became apparent that he was not feeding well, was sleepy and passive and had poor eye control.

Tests established that he had abnormally low muscle tone, with global developmental delay leading to severe learning difficulties and a visual impairment.

Toby’s subsequent medical history has included regular ear infections and burst ear drums (upsetting his hearing, balance and learning); reflux, leading to hospitalisation for dehydration and subsequent medication; a squint, corrected by surgery in 2004; a diagnosis of Autism Spectrum Disorder in 2010; and many genetic tests – none of which have yet found a cause for his condition.

His family are now hoping that the nationwide 100,000 Genomes Project may provide that elusive answer, after Toby became the 1,000th recruit to the initiative in the West Midlands.

“Toby is 15-years-old but has the learning age probably of about a nine-month-old and the physical ability of just over a one-year-old,” said mum Charlotte. “That will give you an idea of the needs he has and the type of help and support we give him.

“He’s a baby, basically, in a teenager’s body. He relies on us totally for all of his personal care and all of his needs have to be met. He has very limited communication, which is all non-verbal.

“He can walk, but not very far, he has no reason to understand why he has to walk from a to b, and he’s incredibly demanding in terms of day to day care because he has no understanding of danger. You constantly have to listen out for him, be aware of things for him and think for him.” Read more

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