Family raising funds so Amelia can have ‘life-changing’ vest
THE family of seven-year-old Amelia McKenna are fundraising for something that could transform her life.
Amelia was diagnosed with cystic fibrosis when she was just 19 days old and has been admitted to hospital 15 times since then.
She now has a port fitted in her chest so that antibiotics can be administered without the need for a cannula. She has to take 40 tablets, uses nebulisers and has up to four physiotherapy sessions every day of the year to try to stay healthy.
Each morning Amelia, a pupil at Stoberry Park School in Wells, has percussion therapy during which family members – usually mum Zoe – press their hands against Amelia’s chest, back and sides for 30 minutes to help prevent her lungs and digestive system from being clogged with mucus.
“It means she has to get up an hour earlier than her brother and sister and just lie there while we do it,” said Zoe, who has begun fundraising for a physiotherapy vest that she says could be life-changing.
“It’s a bit like a life jacket that does the vibrations for her,” said Zoe.
“It would be massive for her. It would mean she’s not pinned down having physiotherapy, she could sit up and watch the telly, and it will allow her to use one of her nebulisers at the same time. It would give her a bit more independence.”
Physiotherapy vests are not available on the NHS. A new one costs £7,000, and a reconditioned one – which is what Zoe is aiming for – costs about half that.
A fun and games day in August at The Square soft play centre on Priory Road, with facepainting, a tombola, a raffle, sweets for sale and hook a duck, helped raise more money towards the target.
A mufti day at the Blue School, where Amelia’s brother Jacob is a pupil, had already brought in £1,300, and other fundraising events have made another £1,000.
Zoe will be fundraising again at the Wells rugby club fun day on September 1 (noon onwards).
There is no known cure for cystic fibrosis, and people with it have a shorter than average life expectancy.
“It’s changed our outlook. We know tomorrow might never come,” said Zoe.
“We try to give more to Amelia to make the memories.”