Throughout his life, the hurdles faced by 13-year-old William Davis as he battles a rare genetic disorder have been documented in the ongoing TV series Born To Be Different.
Born with Tuberous Sclerosis Complex, the Bury St Edmunds teenager has severe epilepsy, autistic spectrum disorder, attention deficit hyperactivity disorder, a brain tumour and endured two brain surgeries.
His fight continued in the latest episodes of the Channel 4 show, which follows the lives of five other children born with a disability, as his family embarked on an emotional struggle against the system to secure funding for a residential placement at a specialist school.
As his impulsive and aggressive behaviour became harder to manage with mum Paula, who suffers from Multiple Sclerosis, and sister Jessica often facing the brunt, his family knew they needed to do something.
They turned to St Elizabeth’s School, in Hertfordshire, which provides education, care and medical support for people with epilepsy and other complex needs.
To secure a five night a week placement for a year costs more than £100,000, the local authority’s health, education and social services departments needed to sign off on the move.
Mark Michalkiewicz, acting head at St Elizabeth’s, explains: “It’s certainly a difficult process. Local authorities are strapped for cash and it’s significantly more than sending a child to one of the local specialist schools.”
It was the start of an 18 month struggle as their first application to the authority’s out of county panel was rejected.
In the programme, Paula, 42, says: “They said they would reconsider if William got worse or I got worse. Hang on a minute, he’s one off the end of life care category at the children’s hospice anyway.
“Strangely enough if he deteriorates to that degree we wouldn’t be thinking of boarding school. If I deteriorate they’re talking about me becoming a full time wheelchair user.
“I feel abandoned by the system and it seems this constant barrier put in your way by the system that the great world assumes helps you. I would ask them to spend 24 hours with him before they make a decision.”
After three more appeals to the panel, they were finally given the go-ahead in July.
During the show, his dad Nick recounts: “They would say no and we would point out that actually they had once again got their facts wrong.
“It’s a big decision, massive change to the family dynamics. As much as it’s going to be very very hard it’s the right thing to do.”
As they take William to his new weekday home, Paula says: “It’s very hard as a parent to actually hold your hands up and say ‘our son needs this, we as a family need this’ and it’s even harder to fight the system to get it.
“I know he will come home at weekends but it’s hard, it’s really hard. In my heart of hearts I would keep him at home. He would never go anywhere apart from attached to me but that isn’t what’s best for him. We’re trying to make the decisions that are best for our family with William at the centre of it.”
When asked by the Bury Free Press how she is feeling now about the battle to secure a placement, Paula reflects: “It felt like a fight rather than the support services working with us.
“Their suggestion was foster care which I found really hard because I don’t think they would have suggested it if I hadn’t had MS. They say that that would have kept him in the county.
“William’s life may well be short but it deserves to be happy.
“It had a real emotional toll on me because I love William with all my heart .
“I do get a few nights sleep now when he’s away because I have to sleep in the same room as him.
“It’s given him a life and us a little bit more balance.”
When asked why it took so long for the Davis family to get what they needed, a spokesman for Suffolk County Council said: ““Throughout our work with the Davis family, we have always sought to find
for William the best provision we could, within Suffolk if possible.
“This includes securing the necessary funding, investigating all local options and, inevitably, completing the necessary processes and assessments.
“The family wanted to see William at their chosen school from September last year and we’re pleased that this timescale was met. We are continuing to support the family.”
For further information about William’s condition, visit www.tuberous-sclerosis.org