A fundraising appeal has been launched to help a five-year-old from St Neots receive a specialist buggy which would help cut the number of seizures she has.
Emma Hobart has a rare and severe neurological condition which means even the change in temperature caused by a cool wet wipe touching warm skin can be enough to trigger a seizure for her.
She is unable to walk, talk, crawl or sit up, but the only buggy she has access to is far too big for her, so her parents are having to prop her up with blankets, which cause her temperature to fluctuate - risking more seizures.
The lack of proper support puts her at risk of developing further medical issues and causing her more pain.
Emma, who shares the condition SMPD4 with her ten-year-old sister Chloe, urgently needs a specialist buggy to protect her when she leaves her home, but this costs £5,278.
But while Chloe is fully supported in a specialist buggy that keeps her safe when leaving their home, the only buggy Emma has doesn’t provide the postural support she needs.
Without this, Emma risks not only injury during a seizure, but also triggering more, as parents Hayley and Chris are forced to prop her up in her buggy with blankets to stop her sliding.
This causes her to become very warm before her temperature then dips when she’s removed.
The buggy Emma needs to fully support her will cost £5,278, so mum Hayley, turned to Newlife The Charity for Disabled Children for help.
Now, the charity has launched an appeal to help raise the funds necessary to provide the specialist buggy.
Newlife is the largest charity provider of specialist disability equipment in the UK.
Hayley said: “Laying her on a baby mat to change nappies or going from a warm environment to a cold one can all cause seizures, so having a specialist buggy her is vital as it not only protects her but without the padding she doesn’t risk such a temperature change.
“I’m also really worried about Emma’s hip getting worse. Because her seizures were so bad in early life, her hips didn’t develop properly and being jolted about in a buggy that doesn’t support her can make this worse.”
Emma’s right hip is also coming out of its socket. She faces several botox injections each year under general anaesthetic to relax the muscles around her hips and may need to undergo double hip surgery to stabilise them.
Her parents fear the lack of support in her current buggy will make her condition worse and cause Emma more pain.
Hayley added: “Even when we move her position sometimes it looks like Emma is wincing in pain, but having this buggy would mean picking her up to transfer her less as it could go straight into our car, as we have a Wheelchair Accessible Vehicle.
“The specialist buggy Emma needs is the same one Chloe has right now, so we know it’s exactly what Emma needs to keep her posture supported, protect and keep her comfortable without all the blankets that risk the shock of the cold air when she’s taken out of her buggy.”
Kam Dulai, Newlife’s child and family support manager, said: “It’s clear this buggy will make such a huge difference to Emma’s life.
“We are calling on the local community to help us raise the funds necessary to help give Emma the buggy she needs to keep her safe, which will give the freedom to attend medical appointments, and go anywhere else she and her family need to go, knowing she is as safe and protected as possible.”
To donate, visit https://newlife.support/Emma, email fundraise@newlifecharity.co.uk or call 01543 462 777.
Any money raised above the amount needed for the buggy Emma needs will be used to help other disabled and terminally ill children in need.
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