A four-year-old boy with a rare killer disease is unable to “run around” with his friends after the NHS refused to fund a new powered wheelchair for him just one week before his first day at school.
Brave Fraser Simmonds, who has never been able to walk because of a progressive, muscle-wasting condition, started reception yesterday along with thousands of children across the country.
But he is the only four-year-old in the world who is restricted to this extent because of a rare, life-limiting disease known as Duchenne Muscular Dystrophy (DMD).
Because of their son’s limitations, Fraser’s parents approached the NHS and requested a powered wheelchair.
Fraser with his mum, Shelley (Image: Shelley Simmonds)
They wanted him to be able to keep up with his peers, join in with playground games and “have the happy school life every kid deserves”.
But, after “dragging their heels” for three months, the service refused to fund a powered wheelchair – just one week before Fraser’s first day.
The NHS Individual Funding Request Team said they did not class “social interaction” at school to be a clinical or medical requirement.
And despite his unique condition, Fraser failed to meet their “exceptionality” tests, mum Shelley said.
With a door to balance against and his new splints, Fraser managed a ‘standing up’ pose (Image: Shelley Simmonds)
Little boy suffering from rare disease thanks people for support
The type of chair Fraser needs takes six weeks to make and requires driving lessons, so he now faces at least an entire term without being able to play properly.
He currently has a manual one but this can only be pushed by an adult.
“A powered wheelchair with a rise and fall seat would change his life in so many ways – he would be able to be eye-level with his peers, get from A to B by himself and move around the playground to join in games with his friends,” Shelley said.
“Every parent wants the best possible life for their child.
“We now feel helpless and desperate, the worry that Fraser will not be able to keep up physically with children at school, fearing this will impact his social interaction and friendship making.
“The thought of our precious Fraser being lonely at school we cannot put into words.
“We were due to make home adaptations this year and now we are torn between Fraser being happy at school or happy at home which is a choice we never wanted to make, it’s the impossible.”
Fraser on the wheelchair his family desperately want him to have (Image: Shelley Simmonds)
Fraser’s condition prevents the muscle-repairing protein ‘dystrophin’ from being produced.
Without it, muscles gradually waste away, and life expectancy for sufferers is typically around 25 years.
Fraser and his family – mum Shelley, dad Geoff and sister April (Image: Shelley Simmonds)
“Last year I contacted the NHS Wheelchair Services and said when Fraser goes to school I would like him to have a powered wheelchair so he can keep up with the other kids,” Shelley said.
“They said they didn’t have any available – I don’t know whether they meant in their budget or in stock – so we tried two different types from separate companies and asked Basildon and Brentwood CCG for funding in June.
“Sadly, they said no last week, and all they can offer is a £2,500 voucher towards one, leaving us to fund the remaining £10,000 ourselves.
“To say we are devastated is an understatement.
Fraser started big school yesterday (Image: Shelley Simmonds)
“Our case has taken 11 weeks to reach a decision and now we have a double blow – no wheelchair in time for school and no funding.”
Shelley has now set up a crowdfunding page in attempt to raise the cash needed to give Fraser an “independent and inclusive” school experience.
A spokesperson for Basildon and Brentwood CCG told Mirror.co.uk: “We are unable to comment on individual cases. The criteria for the provision of wheelchairs is based on national guidance and the decision we make on each individual case is based on clinical need.
“We provide wheelchair vouchers and people can top these up with their own money if they wish to buy a different type of chair.
“When we cannot fund either a treatment or piece of equipment we always endeavour to help people by liaising or directing them to other organisations who may be able to further assist.”
“We know of no cases in the Basildon and Brentwood CCG locality where a child requiring a wheelchair has not been assessed and issued with one as part of their education and health plan.”