A children’s disability charity is urgently appealing for help to fund vital disability equipment for 41 children across the South East on their waiting list for help totalling almost £52,000.
Newlife the Charity for Disabled Children say children are being failed by health and social care services and forced to go without the vital disability equipment they need, leaving families with little choice but to turn to charities for urgent help.
Now Newlife, the largest charity provider of essential disability equipment across the UK, is appealing to communities across the South East to help them fund the equipment that disabled children desperately need for everyday life.
One of the children on Newlife’s waiting list is five-year-old Ezra Thorman from Ramsgate in Kent, who needs a lightweight wheelchair he can use at school to help him join in, instead of being left on the side-lines to watch.
Ezra was diagnosed with Spinal Muscular Atrophy Type 1 at four months old. Until a few years ago he would have likely passed away before the age of two as the muscles needed to swallow and breathe became too weak – but thanks to new drug Spinraza, the development of his symptoms has slowed significantly.
Although Ezra can’t walk or stand unaided, he has limited use of his arms. A wheelchair he can self-propel would not only help develop the strength he needs, it would give him the independence to play with friends and build confidence in his own abilities.
However, the family’s local Wheelchair Services could only offer Ezra a standard wheelchair and, on assessment, they didn’t think he was strong enough to use it. Instead, his family received a £556 voucher towards a lightweight wheelchair, leaving them to raise a further £835 – so they turned to Newlife for help.
Mum Portia said: “We know it’s because of Spinraza he is surviving, but we want him to really live – and to make the most of his life he needs the right equipment.
“Ezra is really bright and loves any bit of independence he can get. He’s in reception class in a mainstream school, but only has an adaptive seat on wheels which has to be pushed. Without a lightweight wheelchair he can’t move, do anything by himself, or even join in with friends.”
Newlife can only help Ezra and the 41 other children on the waiting across the South East if it can raise the necessary funds.
Newlife’s founder and CEO Sheila Brown said: “We often hear of children left without vital equipment, including specialist beds, wheelchairs, seating, and walkers, because of red tape, waiting lists, or lack of the right equipment.
“Being forced to go without this means disabled children are left at serious risk of injury, trapped in hospital waiting for discharge, unable to fulfil their true potential, or, tragically, unable to find comfort in their last months of life, even having their condition – and pain – worsen unnecessarily.
“For many families contacting Newlife is a last resort and as a charity we are doing everything we can to fund the equipment that is often described as ‘life changing’. We urgently need help to do this.”

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