Why our life with William is so special

By Lisa CleverdonLIKE any other youngster, William Davis is excited about turning six.He is looking forward to opening his presents and seeing his favourite football team play as part of a special birthday treat.

By Lisa Cleverdon

LIKE any other youngster, William Davis is excited about turning six.

He is looking forward to opening his presents and seeing his favourite football team play as part of a special birthday treat.

But for his parents, Paula and Nick, every moment spent with their son is precious.

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A rare condition called tuberous sclerosis means no-one really knows how many more birthdays William - who can suffer up to 100 draining seizures a day - will have the chance to celebrate.

Severe epilepsy, coupled with learning difficulties, autism and a hyperactivity disorder, have led doctors to believe there is a high possibility he will not outlive his childhood years.

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This month William will feature in three hour-long programmes on Channel 4, highlighting the heartbreaking struggle facing the Davis family.

Born to be Different, which will be shown at 9pm on August 9, 16 and 23, is a candid portrayal charting everything from the initial shock of diagnosis, to the day-to-day reality of living with a disabled child.

Mrs Davis, 34, said she agreed to make the documentary in the hope it would make more people aware of the condition, which was diagnosed at William's birth.

“Nick and I know we are going to outlive William, so we just try and enjoy every second we have with him, and live life to the full as much as we can,” said Mrs Davis, of Sicklesmere Road, Bury St Edmunds.

“Because of his epilepsy, he has lots of seizures, sometimes up to 100 in one day, and there is only so long his body will be able to cope with them.

“We know there is always a potential medical crisis around the corner. Obviously we hope he will live past his childhood, but we have had to accept the fact there is a good chance he will not.”

Tuberous sclerosis is a genetic fault that means William is lacking the gene that switches off tumour growth.

A normal day for the Davis family starts at 5.30am, following a night of disturbed sleep, when William is given his epilepsy medication.

An hour or so later William wakes up and spends a manic hour running round the house before going off to Riverwalk Special School, Bury St Edmunds, at 9am. He normally goes to bed at about 9.30pm.

“He has the thought speed and mental development of a two-year-old and struggles with everything,” said Mrs Davis, who gave up her job at Otley College when William was born.

“The day-to-day management of a disabled child is very hard work. We love him intensely and luckily he does not realise he is different to other people. He has a wicked sense of humour and is a very happy child.”

Filmed over the past five years, William, an only child, is one of six youngsters - all with different disabilities - to be featured in the moving documentary.

“He has been filmed since he was around eight months old and over the years the film crew has become friends,” said Mrs Davis.

“It can be very hard, especially when we see friends moving on with their children as they get older, when we are still trying to teach William how to feed himself.

“His condition brings a lot of struggles, but it brings different qualities to our lives as well. He is a real Ipswich Town FC fan and we are taking him to see the first game of the season on Saturday.

“Every milestone he reaches is made that much more special and we really enjoy all the little things. Our priority is just to make sure he is happy and make sure his life is as good as we can possibly make it.”

For more information on William's condition, contact the Tuberous Sclerosis Association on 01527 871898.


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