THE family of a Retford toddler who has battled serious illness and disability have spoken of the challenges they still face raising a disabled child.
The Stones family, from Retford, have been through a whirlwind 18 months since their youngest son William became very ill at the age of one.
Now William, two, is on the road to recovery and parents Dave and Julie want to use their situation to raise awareness and funds.
In April 2010 William was admitted to hospital with breathing difficulties but it soon became clear he was seriously ill. He suffered a cardiac arrest and then a brain injury due to lack of oxygen and blood to his brain.
“He was in hospital for six months and lost his ability to do almost everything,” explained dad Dave.
“It was unclear whether he could see or hear. He couldn’t feed and relied on a tube through his nose and he had no movement.”
Their lives were turned upside down as William underwent therapies and tests including X-rays, brain scans, cognitive tests and many more invasive studies.
Eventually doctors diagnosed he had suffered an injury to the part of the brain which controls movement and co-ordination.
But things were about to get worse when in July 2010 William was diagnosed with a heart condition and in September 2010 he had major heart surgery at Leeds General Infirmary.
Now, 18 months later he is able to crawl and stand up, his hearing and sight has returned and slowly but surely William is bouncing back.
His next big challenge is to walk and talk, after he recently took his first few wobbly steps, aided by his parents.
Mum, Julie said: “Life is so difficult raising a disabled child. Before this happened I never would have thought of the daily struggles people would encounter, not necessarily with William but with services, equipment, therapy and the endless forms and documents to be filled in to receive funding and disability benefit for William.”
“This is something we desperately need to ensure he gets, so he can access private therapies that the government simply do not provide.”
Every day Julie spends hours working on William’s physiotherapy, neuro development programmes, speech and language therapy and a vigorous feeding schedule.
“It is very much the more you put in, the more he will improve and respond. And it’s a case of balancing it all with providing as normal a life as possible for our eldest son Alfie who is four.”
“It is great to finally see them playing again, albeit a bit differently to before but at least they can do that.”
Only continued rehabilitation will help improve William’s communication and movement, but the NHS cannot cover the full cost of his treatment.
Dave added: “The results so far have been amazing. We’re fortunate to have had help from our private therapist in the south east and support from Doncaster Royal Infirmary under consultant Dr Kurrian and the paediatric community team headed up by Sandie Burbeck.”
“But the struggle for equipment, disability aids, parking badges is another matter entirely.”
• The Stones family are organising a charity race and karaoke night at Breakers Snooker and Social Club on Newcastle Avenue on Saturday 19th November.
Televised horse races from over the years will be screened and people will bet money, with William’s charity getting a percentage of the winnings.
Some items have been donated for auction by local sports people including golfer Mark Foster.
Dave said: “My roots are in Worksop and I still have lots of family and friends there.”
“It would be great to get support from all these people and to raise awareness of William’s condition, but most importantly raise funds for a special little boy who quite frankly should not be in this position.”
The event starts at 7pm. There is no admission charge but donations are welcome. Visit www.williamstonestrustfund.com for more information.