A five-year-old Selby girl with Cerebral Palsy urgently needs a specialist seat to support her so she doesn’t choke while being cared for at her grandmother’s home.
Esmae Robinson was born 12 weeks early and then contracted meningitis and septicaemia which caused Cerebral Palsy. Although her brain is unaffected, she’s trapped in a body she can’t control with muscles too stiff and weak to walk, sit up or even speak.
Her four year-old brother, Riley, has recently been diagnosed with severe Autism. As a direct result of his condition he has absolutely no awareness of danger and in frustration he will often lash out at others, including Esmae.
While parents Lora and Josh work with Riley on calming strategies at home, Esmae goes to her grandmother’s house for a few hours each day, but the only place she has to sit is the sofa which doesn’t support her. As her muscles often jerk involuntarily she slips down and slumps sideways which stops her clearing her own airways properly.
A specialist NHS seat keeps Esmae safe and supported at home, but it’s too bulky to transport and duplicate equipment isn’t funded by health and social care services. Now Newlife the Charity for Disabled Children is urgently calling on the local community to help raise £1,400 needed to provide the specialist seat Esmae needs at her grandmother’s home.
Mum Lora said: “Although we are learning to cope with Riley’s behaviours, with professional help, it’s safer for Esmae to be with my mum for a few hours after school while we work with him. But she urgently needs a specialist seat there to keep her supported and in the right position.
“The only other option is to put Esmae on the floor, but she’s too heavy for my mum to lift up and down so it would put both of them at risk of injury.
“Life with two children with disabilities is very difficult, but we are trying our best to help them both as much as we can in the best way we can.
“With a specialist seat for Esmae at my mum’s home we could focus on giving Riley the help he needs right now, while Esmae is safe and supported too. She could even eat and play while she is there, which isn’t possible right now.
“I would be so much less stressed too – as it is I’m always phoning mum to see if Esmae is ok!”
Newlife’s Senior Manager for Care Services, Carrick Brown, said: “More than one piece of equipment is often vital to keep a disabled child safe at all times, which allows for family or other respite care to step in and provide crucial help and support, as we see here with Esmae and Riley.
Something as simple as a specialist seat would be absolutely life changing for Esmae and her family. Unfortunately, as much as we want to help, we simply don’t have the funds to buy the equipment right now. We are desperately appealing to the local community for help to raise the money so Esmae can have the specialist seat she urgently needs.”
STOP PRESS: Thanks to a great community effort and lots of media support we have now raised enough money for Esmae’s specialist seat.
However, you can still donate to help the other 32 children on our waiting list in Yorkshire and the Humber who need ££58,478 of specialist equipment. If you are able to help If you are able to help please donate via the website, call 01543 431 444 or email fundraising@newlifecharity.co.uk.
