PARENTS Natasha and Chris Ellis have just one dream for their six-year-old daughter Alycia – that she will one day be able to stand without their help.
Alyca, of Abbey Meads, was diagnosed with cerebral palsy when she was nine months old.
But despite attending mainstream Robert Le Kyng School, where she excels in anything computer related, Alycia cannot stand unaided without a walker and gets around by using a wheelchair.
She needs an operation called selective dorsal rhizotomy (SDR), a complex neurosurgical technique used to treat spasticity in the lower limbs, but it is not available to her on the NHS so her family must raise £50,000 so she can have the operation in America.
It echoes the plight of little three-year-old Jack Pike, of Penhill, and six-year-old Robbie Davies, of Lower Stratton, whose families are both trying to raise money to ensure they can lead normal lives like other children.
Chris, 33, an undertaker, and mum Natasha, 27, a part-time nurse who is also in the RAF, are planning a number of fundraising events this year, including taking part in the Three Peaks Challenge.
Natasha said: “Alycia is just amazing, she doesn’t see anything as being an obstacle and she classes herself as being like any child. She doesn’t struggle with things, she always finds a way of doing things for herself.
“We are really going to go for this and we are confident we will raise the money. We don’t want to just arrange small fundraisers, we want to do everything we can because we couldn’t live with ourselves if we thought we hadn’t done everything possible for our child.
“We’d love to be able to take our hands away and see her stand on her own, that would be amazing.”
The couple said they were not informed about the operation by doctors in Swindon or Oxford and it wasn’t until Chris carried out his own research that they found out about it.
“When we were told that Alycia had cerebral palsy, it was such a shock.We just went home and Googled it and you automatically think the worse when you start seeing pictures and reading all about it,” said Chris.
“It was only by chance that I found out about this operation and it is amazing to see how it has transformed so many other children’s lives, it really is the chance of a lifetime and we have to do all we can to get her there.
“This would give her so much independence and enable her to do so many other things she can’t do at the moment.
“Obviously we know it wouldn’t happen overnight and we will have to fund weeks of physiotherapy, but she is so determined.”
Dr Liz Mearns, Medical Director for NHS Swindon, said: “NHS Swindon aims to provide the best outcomes for all its patients.
“Although this procedure is not routinely funded by NHS organisations, there is a process (including appeals) to look at individual funding requests to determine if there are exceptional circumstances.
“Further work is being carried out by the South West Specialised Commissioning Group to consider commissioning services for this particular procedure across the region.”
The family have set up a Facebook group called ‘Alycia...The American Dream’ and are in the process of setting up a fundraising website.
To help the family with their fundraising, call Natasha on 07825828265.
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