Sheffield dad takes on charity ride for son with rare genetic disorder

Tom Atkinson with his son William, who was born with a disorder so rare it has no name.
Tom Atkinson with his son William, who was born with a disorder so rare it has no name.

The father of a Sheffield boy with a condition so rare it has no name is to cycle from London to Paris in aid of the hospital which cares for him.

Tom Atkinson will take on the 330-mile ride for Sheffield Children’s Hospital, which treats his eldest son, seven-year-old William.

William was born six weeks early and has physical and mental abilities similar to those of a one-year-old.

William is unable to feed himself, talk or move himself around – but his family say he has a huge personality which those who know him well can tap into.

Dad Tom, of Crosspool, said: “When William came home, it became evident things weren’t as they should be.

“Over the next few years, William was in and out of hospital. There was a massive team looking after him.

“It was challenging and emotional, but you’ve just got to be strong and believe things will get better.

“It was difficult to know what his future would be and we had massive ups and downs, but you have got to be strong.”

William has rocker bottom feet – where the bones in the feet are arranged differently and resemble the bottom of a rocking chair – and from birth developed a number of other problems including seizures, respiratory distress, pneumonia, epilepsy and a multitude of viruses.

His geneticist studied his chromosomes and found some abnormalities which had caused the problems.

And the disorder is so rare it has no name, only the number of chromosomes missing – 16P13.11.

Now Tom, who is also supported by wife Catherine and their two other children five-year-old George, five, and Charlotte, three, is preparing to join 18 other cyclists to complete the four-day ride in aid of the hospital.

The group – named Team Theo after the hospital’s mascot Theo the Bear –are setting off on Wednesday.

The money raised will go to Ryegate – the hospital’s centre for children with neurological disorders – and the charity’s Make it Better appeal, in aid of the hospital’s new wing.

William is in good health at the moment and has been for a number of years.

Tom, aged 36, said: “From the day William was born, the hospital has done so much for him. Everything they do is incredible.

“The trust consultants put in us as parents is great. They respect our thoughts, views and beliefs.

“The level of passion in the staff that look after William is incredible. Everyone’s role is so important.”