Article by Sophie Finnegan: Fraser Simmonds' parents requested a new powered wheelchair so he could play with school friends as he started reception.
A "lonely" boy with a rare muscle-wasting condition is unable to join in with friends after the NHS refuse to fund a powered wheelchair for him.
Four-year-old Fraser Simmonds from Billericay was denied his new wheelchair just one week before he started reception after the NHS claimed "social interaction" isn't a medical requirement.
The brave little boy suffers from a rare, life-limiting disease known as Duchenne Muscular Dystrophy (DMD) which leaves him unable to walk and fully reliant on his wheelchair.
To help their son integrate with his school friends, Fraser's parents requested a powered wheelchair from the NHS to replace his manual one. But, after "dragging their heels" for three months, the service refused to fund a powered wheelchair.
The NHS Individual Funding Request Team said they did not class "social interaction" at school to be a clinical or medical requirement.
Shelley Simmonds, Fraser's mum, told the Mirror:
"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. 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."
And despite his unique condition, Fraser also failed to meet their "exceptionality" tests, mum Shelley said.
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.
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.
The new powered wheelchair would have given Fraser the ability to keep up with his peers, join in with playground games and "have the happy school life every kid deserves".
"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. 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. 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 Clinical Commissioning Group (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."
If you would like to donate please click here or visit Fraser's Facebook page here.
Article by Sophie Finnegan, Essex Live