A Newcastle-upon-Tyne mum has been battling to get special equipment for her 11-year-old son who has cerebral palsy and needs supportive seating to keep him safe and help stop his curvature of the spine worsening.
Leroy Gibb has quadriplegic spastic cerebral palsy which affects every muscle in his body. He has extremely limited speech, poor head control, experiences seizures and is developing a curvature to his spine which is likely to get worse as he grows. This means he needs extra postural support at all times – which is why having a special seat is so important. Leroy has already had three surgeries to put his hips back into position and relieve some of his pain, but although he has special seating at school, his only alternatives at home are his wheelchair, lying on the floor or his bed.
Despite everything, his mum Catherine says he is the life and soul of the family. She said: “Leroy has an infectious laugh; you just can’t help but be happy when you are around him. He has a real zest for life and he adores his four-year-old sister, Ri. Music makes his world go round and although he has little functional use in his arms, he is determined enough to use what he has to play piano, so he loves to play a keyboard at the table – which is something he also needs the special seat to do as his wheelchair is too low.”
Leroy is able to bring his school chair home at weekends, but it is big and bulky and difficult for Catherine, who has painful arthritis, to haul around.
Catherine adds: “I do it so that three nights a week he can sit in a decent chair which properly supports him and which also means he can play his music. With a seat at home, life would be so much easier – he would be properly supported, preventing his scoliosis from worsening and he could have the joy of playing all the time.”
When Leroy’s chair at school arrived from statutory services, Catherine believed a second would soon be delivered to their home as she had been led to believe a dual application had been made in early 2014. However, when his chair arrived at school she was informed that the school’s occupational therapist wasn’t able to apply for equipment to be used at home as they live in a different authority area.
When Catherine discussed the situation with statutory services they asked for Leroy to be referred by a social worker, but there was a two year waiting list, once referred. Determined to get her son the equipment he needs, when he really needed it, she applied to Newlife Foundation for Disabled Children – the largest charity funder of specialist equipment for children with disabilities and terminal illness in the UK – for a £3,687 chair as well as again to statutory services through her GP – but she is still waiting to hear if they will help her.
Newlife is currently reviewing the family’s application for this equipment.
Catherine added: “It’s crazy; I just want him to have the chair. We need statutory services to do their job. I know budgets are tight but by not funding this it means he might need surgery for his scoliosis – which I’m sure will cost a lot more than the price of a chair!”
Right now, there are another 12 children with disabilities or a terminal illness in Tyne and Wear who need your help to get the specialist equipment that will really change their lives. Further information about the Newlife Tyne and Wear Fund – and how to specifically donate or fundraise to support Leroy – can be found by going to www.newlifecharity.co.uk/tyneandwear or by emailing email@example.com. Telephone donations can be made by calling 01543 462 777.
Every penny donated or fundraised in Tyne and Wear is guaranteed to support vulnerable families in the county. Newlife has already helped 132 children in Tyne and Wear through equipment grants and loans totalling nearly £165,749, so the charity knows there is a very real need for a specific county fund. In this way it aims to help more children, more quickly.
Special disability equipment including wheelchairs, walkers, beds, seating and communication aids can help give children independence, keep them safe, relieve pain and overcome challenges. For instance, you could help a child be discharged from hospital, take their first steps or kick a football with their friends. . . .
Pictured: Leroy Gibb