A charity appeal has been launched to raise money for a lightweight wheelchair to help a little disabled boy get around school.

Ezra Thorman, from Ramsgate, has genetic condition spinal muscular atrophy (SMA) type 1 so he is unable to walk or stand unaided.

However the five-year-old has some use of his arms, so with a lightweight wheelchair he'd be able to self-propel himself around - meaning he can finally join in, instead of sitting on the sidelines.

But his family’s local wheelchair services could only offer Ezra a standard type which he is not strong enough to use, so instead gave a voucher towards a lighter one.

The family now has to raise a further £835 and have turned to disabled children's charity Newlife for help.

Mum Portia says they want Ezra to really live his life.

"He is really bright and loves any bit of independence he can get," she said.

"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."

When Ezra was diagnosed with SMA type 1 as a baby, his family were told he would have problems moving, talking and breathing, and would be unlikely to survive for long and certainly not past two.

SMA type 1 is the most severe form of the disease caused by a breakdown of the nerve cells in the brain and spinal cord.

This means the brain stops sending messages that control muscle movement, severely limiting movement and causing breathing and swallowing difficulties.

But Portia says thanks to medical science, in the form of ground-breaking drug Spinraza, Ezra is defying the odds and the family has been blessed with time.

He thrived at nursery and started at Newington Community Primary School in Ramsgate in September.

Last year the family were able to raise £5,500 for an outdoor chair called Tiny Trax, which allows him to drive over all terrains.

It means being able to take part in many outdoor activities.

But now the focus is on the lightweight chair, to give him the independence to play with friends and build confidence in school.

"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," Portia said.

Newlife has launched a massive fundraising campaign for almost £52,000 for 41 children in the south east needing vital disability equipment and Ezra is one of them.

The organisation believes children are being failed by health and social care services and forced to go without, leaving families with little choice but to turn to charities for urgent help.

Newlife’s founder and CEO Sheila Brown says they 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," she said.

"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."

To support the campaign click here. https://newlife.support/KidsSouthEast.