THE latest chapter in the life of an 11-year-old boy, who has battled a rare genetic disorder since birth, is the focus of an ongoing TV documentary which returns to screens next week.
Almost every hurdle faced and milestone achieved by William Davis has been chronicled in the series Born to be Different as he fights Tuberous Scerlosis Complex - a condition which results in severe epilepsy, autistic spectrum disorder and attention deficit hyperactivity disorder.
The Channel 4 show airs on Thursday and follows William as he celebrates his 10th birthday - a landmark doctors said he may not live to see - before enduring traumatic surgery to remove a SEGA brain tumour.
It also tracks the lives of five other children born with a disability.
His mum Paula and dad Nick, of Bury St Edmunds, agreed to take part in the programme to increase awareness of his condition and disabilities which affect children.
Mrs Davis, 40, said: “The series has been very good in showing the highs and lows.
“There’s no doubt that having a child with the problems he has can be really hard work but it’s how you get on with it as a family.”
Over three weeks, viewers will witness the Davis family’s resilience and capacity to cope as they endure adversities and triumphs.
Mrs Davis said: “Because William’s epilepsy was so bad, we were warned that he would be lucky to live till 10. However, we had his 10th birthday which was a huge celebration.
“The following spring though, his behaviour deteriorated and he had to have a brain tumour removed in November. It was a risky operation because it was right in the middle of the brain.
“He’s come through it pretty well but he still has another brain tumour.”
After two years of fund-raising, his family raised more than £20,000 and received a £30,000 grant to adapt their home to make it more suitable for William, who has variable mobility. Following the work, he now has his own bedroom.
However, the family faced another setback when Mrs Davis was diagnosed with Multiple Sclerosis, which affects her mobility.
She said: “I’ve got a significant lack of strength in my left leg and my right leg isn’t brilliant either. It’s fine but it does add to the complications. I’m looking into getting a wheelchair. We now need a vehicle that can fit a wheelchair for William and myself.”
The documentary starts at 9pm.Visit www.tuberous-sclerosis.org