A Sheffield mum has called for more support to parents with disabled children after a fundraiser for her son has surpassed £6,000.
Susie Clements, from Broomhall, has a five-year-old son called George, with four limb cerebral palsy. She is fundraising for a wheelchair bike to help George with his mobility.
She said: “For me, everything feels like an effort. If I take George into town, I have got to get all his equipment in the boot and I have got to get him in the car.
“I just want to make it as easy as possible and get equipment that makes us able to enjoy stuff as a family that we would enjoy if George was not disabled. “
Mrs Clements added: “Disabled equipment is extremely expensive. We’re fortunate as the NHS provides some great equipment like supportive seating and walkers.
“But there is a lot that’s needed for George that is not covered by the NHS, in the past we’ve been asked to find over £6,000 for an electric wheelchair and £3,000 for a car seat. The NHS doesn’t give us much financial support and the charities don’t have any money at the moment, it’s all in a really bad state.
“You are dealing with the practical and emotional side of having a disabled child, to be told to find thousands of pounds feels like a lot of pressure.
“I have often felt very overwhelmed. It’s grossly unfair.
“There are days where we feel we are fighting just to get through.
“When we first started fundraising, I struggled. The thought of asking for money horrified me, but because of the cost, we had no choice.
“When it’s your child, you will do absolutely anything to make their life better.”
A report by Scope, a disability charity in the UK, in 2019 concluded that families with disabled children on average face extra costs of £581 every month and nearly a quarter of these families have monthly costs in surplus of £1,000.
The UK Government does provide a Child Disability Allowance that can range between £24.45 and £156.90 a week depending on the child’s situation.
The NHS were approached, but did not wish to comment.
However, Mrs Clements added: “We have had some amazing support from the NHS and Sheffield Council.
“We have a carer that comes to look after George for eight hours a week so we can spend more time with our other children. We also have had a really good service from all the therapists at Ryegate and the hospital.”
Susie and her husband Andrew found out about George’s condition when he was six weeks old. Mrs Clements said: “I remember panicking, trying to process what holes in George’s brain would mean for him.
“But then I thought that we have got to do all we can to make life okay.”
George’s brain imaging displayed multiple strokes caused by a fall that Susie had when she was 26 weeks pregnant.
“Despite experiencing difficulties that no five-year-old should have to, George always has a smile to give. He loves being outside, he loves the fresh air,” she said.
“We go to the parks in Sheffield a lot. I have started walking into town with him, he quite enjoys being out and seeing people.”
The fundraiser for George has reached north of £6,000. Mrs Clements added: “To those that have donated or are considering it, thank you for fueling that hope in enabling George to lead a more fulfilling enriched life and to experience what other able bodied children experience.
“Life isn’t about what George can’t do, it’s about what, with a bit of help George can do.”
To donate to George’s fundraiser, click here.