The single dad of a young girl born with two holes in her heart and cerebral palsy says he will ‘fight every day’ to ensure she is able to live her life to the fullest.
Freya Bailey, 12, from Irlam in Salford, relies on a wheelchair every day due to tense muscles and stiffness. To date, she has had five major operations, with the most recent one taking place just five months ago.
“Despite everything, she’s got a wicked sense of humour,” dad Darren, 50, said. “She has a real sense of adventure. Despite all of her difficulties, she’s very open minded about things. She refuses to let anything get in her way."
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Five years ago, Freya underwent an Selective Dorsal Rhizotomy (SDR) operation at Alder Hey Children’s Hospital. The surgical procedure helps to reduce spasticity in the lower limbs, but Freya’s operation wasn’t able to be funded by the NHS.
Specific requirements for SDR mean that the procedure can only be funded on patients who are aged between 3 and 9 and have a Gross Motor Function Classification System (GMFCS) ranking - which identifies how cerebral palsy can affect muscle tone - of between two to three.
But Darren, who works as a water engineer, says that because Freya was given a level four diagnosis of cerebral palsy, she did not fit the criteria for the NHS-funded operation. “It’s really difficult to get the funding for SDR beyond level three,” Darren explains. “But we knew it was what she needed.
“It’s taken a lot of pain away that she was in on a day-to-day basis. We saw it as a positive and a good thing. They reckon it can help reduce spasticity and tightness in the muscles by 65% alone. We noticed a massive difference straight away.”
But it now also means that Freya has to undergo three specialised physio sessions a week totalling almost £1,000 a month. “The physio is not to help her get any better,” Darren explains. “But it will stop her from being in any further pain or getting any worse.”
Last year, Darren spoke about his struggles to get a new assessment of the care Freya needs, whilst also seeking support for himself with respite.
Darren estimates that more than £60,000 has been spent to date on physio and specialist equipment, like trikes and wheelchairs. He’s also had to remortgage his home to be able to afford to readapt it for Freya.
“It’s a lot of money but it’s all worth it,” he explains. “She’s gonna need help for the rest of her life.
“I’m a single dad working a full time shift where I often end up working late nights. When I’m not working or looking after Freya, I’m fighting social services and local services to get what she needs.
"You look at a girl like Freya and think she will be getting everything she’s entitled to but that’s sadly not the case whatsoever.”
The battle to support Freya has led Darren to think creatively when it comes to fundraising. Amongst his latest fundraising efforts, Darren and his friends have travelled from Anfield to Old Trafford on scooters dressed as grannies.
They recently also took part in a 220 mile cycle ride from Southport on the West coast to Hornsea on the East coast over three days. It's helped raise money to pay for Freya's support whilst also raising awareness of her condition.
“My worst fear as a parent is what is going to happen when I’m not here as she’s never going to be independent,” he explains. “But all I can do right now is be proactive and positive about things and do what I can to support her.
“If it was just me, I’d probably just give up but I need to keep on fighting for Freya. I’d do anything for her, but it can be exhausting. I’m just lucky to have the job I’ve got and the friends and family I have to help give her everything she needs.”
