‘Something as simple as this seat would alter Esmae’s life’
The two Robinsons children with have disabilities. Now their daughter needs a special chair to make sure she doesn’t choke. Catherine Scott reports.
Having two children with disabilities is hard but we are doing our best.
Lora Robinson who has a daughter with cerebral palsy and son with autism.
ESMAE ROBINSON looks forward to going to her grandma’s for tea.
But soon these precious trips to her ‘‘nanny’s’’ – as she calls her grandmother – may have to stop.
Five-year-old Esmae, from Selby, has cerebral palsy and needs a specialist seat to support her so she doesn’t choke while being cared for at her grandmother’s home.
“Esmae loves going to her nanny’s for tea, but she cannot support herself or feed herself and so my mum is worried she might choke,” says Esmae’s mum, Lora.
Esmae 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.
“I went into labour at just 28 weeks and Esmae was born weighing 2lbs 10oz although she dropped to 2.2lbs,” recalls Lora.
“But when she was about five days old she became really, really poorly and we were told she had meningitis and septicaemia and that we should tell our families to come to the hospital to say their goodbyes.
“But I wasn’t going to have that. I just knew that she would pull through and I said I wanted to take her home,” says Lora, who has kept a diary of her daughter’s battle which she cannot bring herself to read.
To the doctors’ amazement, that night she started to respond to treatment and she did pull through, although she was left with damage to her brain which has caused the cerebral palsy. She came home 10-and-a-half weeks after she was born
As well as being something Esmae enjoys, tea at Lora’s mum’s is also a respite for her and husband Josh as their son Riley, four, has just 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 full-time carers 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 local 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.
“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,” says Lora.
“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.”
Esmae may have severe disabilities but she attends a mainstream primary school that she loves and where she is very popular.
“She is really bright – she’s the brightest in her class, especially when it comes to numbers.
“But she does get frustrated sometimes as she struggles to communicate,” says Lora.
“She is learning to use a communication tablet which will really help her.
“It is hard having two children with complex needs, and I do have some bad days, but then you have to snap yourself out of it.
“My husband is brilliant and really hands on. We cannot leave Riley alone with Esmae as he can lash out at her so one of us has to be in the room with them at all times.
“He is the most loving little boy most of the time but he is unpredictable and something can just set him off and he has a meltdown and can lash out.
“He does tend to get jealous when I give attention to Esmae so it is hard to spend time with them both or go out as a family.
“Christmas was pretty hard, especially for Riley as he struggles with change in routine. We didn’t go out as it would just have been overwhelming for him, but we still had a brilliant time.”