A father from Irlam is raising money to help give his daughter – who has cerebral palsy – the gift of new legs.
Due to a ‘difficult birth,’ seven-year-old Freya Bailey was born with cerebral palsy and two holes in her heart, meaning she had to stay in intensive care for six weeks. As a result, she’s had to use a wheelchair since being a few years old.
Farther Darren Bailey has already raised £25,000 to enable the youngster to have Selective Dorsal Rhizotomy surgery (SDR) in January.
SDR is major surgery, which sees nerves in the lower spine being severed in order to reduce muscle spasticity and tightness.
“We’ve been fundraising since April for SDR surgery, which generally people tend to go over to the States for. However, they’ve been doing it here in the UK for a couple of years,” says Darren.
Unfortunately, funding for SDR surgery was pulled by the NHS in 2016, due to there being ‘not enough research’ to suggest that children were benefitting from this operation.
There are still a handful of hospitals in the UK which carry out the procedure, however this now means that families across the UK have to fund this life-changing operation themselves.
Not only is it the operation that has to be funded, but the aftercare, too.
“There’s three weeks of intensive physiotherapy which is provided with this operation, so Freya will have to stay in hospital for three weeks, but after that, basically, you’re on your own again, you have to fund the physio,” explains Darren.
This is where the latest fundraiser comes in – Darren set up a Facebook page, ‘Freya Bailey the Speeder Bike Wheelchair Wonder Girl’ towards the end of August, to go alongside the already existing Just Giving page.
The Facebook page keeps supporters up-to-date with Freya’s antics and all the latest fundraising.
“The money we’ve raised so far will last Freya for two years of physiotherapy. It costs around £240 a week for three sessions, so the fundraising is still ongoing.”
Darren describes the response to the Facebook page as ‘overwhelming.’
‘I think because I’m in the thick of it, I don’t get to see that side of it. There’s even donation boxes at our local butty shops, and when I went to collect them, they say, “oh, everyone comes in here and says that they know Freya.” It’s nice to hear little things like that. It’s hard work and it has to carry on.’
Darren also expresses how difficult it is to find information and support for families of children with cerebral palsy.
“We only found out about this operation through dire chance, it wasn’t through any help or guidance that we’d had, it was just by coincidence.
“You have to search for everything – all the information – it’s still forthcoming, and that it still the case.”
Really proud of this cheeky little girl. Who needs a wheelchair when youre climbing a wall ha ha pic.twitter.com/AOridvPHHg
— Freya’s little legs (@scootergrannies) November 17, 2017
With the support of family, friends and the community, 2018 will see Freya going through the SDR surgery in Liverpool.
Darren says,”I don’t know whether Freya’s going to be one hundred percent mobile, she might need some sort of aid, but every patient is different, so we’re going to play it by ear and see what happens.”
This was originally written as part of a university assignment.