Â£55,000 needed for life-changing treatment to make Peterborough girl pain free
It was a mother's instinct which told Fran Heriot that something was wrong with her daughter Halle. And not even a GP's assertion that her toddler was a late developer could convince her otherwise.
Fran, of Fenside Drive, Newborough, was concerned that Halle was not starting to walk and talk like other children her age, and after pleading for help her daughter was sent for an MRI scan which confirmed she had cerebral palsy, bilateral spastic diplegia.
But any relief for Fran at receiving a diagnosis was overshadowed by the shock at hearing that her small girl, who is now just four, would need constant care and medication for her muscle stiffness and spasms.
“It was a real shock. It’s very had to process when someone tells you your child has a condition that’s not curable and that’s life-long. It took us a few days and weeks to compute that,” she said.
Fran (36) and Halle’s dad Tim (40) spent months researching possible treatments for Halle when they came across surgery called selective dorsal rhizotomy.
The operation would help rid Halle of the pain she suffers on a daily basis and maybe allow her to walk unaided for the first time.
The family were told Halle could receive the life-changing operation at the world-famous Great Ormond Street Hospital, but the procedure and follow-up long-term physiotherapy would cost £55,000 as it is not available on the NHS.
Fran admits she has had moments where that amount felt unachievable, but a sense of optimism now prevails, largely due to the successful launch of a fundraising campaign at the end of January which has already raised an impressive £5,000.
Fran said: “We launched at 8.30 at night and by 10.30 had £500. It was absolutely bonkers - I did not stop crying for two to three days. I did not expect that kind of attention or that kind of interest.
“We live in Newborough and there’s a great community spirit. It was the community that pushed those first few donations that came through. Then people from Europe started to donate. That’s the power of social media.”
Campaigning has brought its challenges though, with Fran having to move past her reservation of putting pictures of Halle on Facebook to raise awareness.
But clearly the idea is working with the family inundated with offers from people to take on charity runs, while fundraising gigs and a race night are in the pipeline to get to that magic £55,000 mark.
“It’s going to be life-changing,” said Fran, discussing the surgery.
“It’s not going to cure the cerebral palsy but will rid her of her pain and potentially help her not be on life-long medication. She’s been on strong medication ever since she was two.
“It’s the plan to have her coming off medication and to stop her spasms. She does not sleep very well at night.
“She will still need her wheelchair and splints, but there’s that chance she may be able to take some independent steps as well.”
Halle was born in 2012 after a pregnancy with no complications, and it was only thanks to some forceful parenting that she finally received her diagnosis.
Fran explained: “What we noticed as parents was that Halle was not achieving her milestones. There are certain things that children achieve within certain timescales - sitting up, crawling, walking around, their first words. All of those things were not happening for Halle. It was a mother’s instinct.
“I spoke to my GP and was quickly told there was nothing to worry about, that she’s a late developer. I was even told she was lazy which was infuriating.
“I could see she was not lazy. What she wanted to do she could not do.”
It was only after pleading to a GP that Halle was eventually referred for an MRI scan which revealed the four-year-old’s condition.
Fran said: “The hardest element was that it was not clear why she has cerebral palsy. I’m the sort of person that likes to have whole facts and I really felt I needed to know the information, but I’m past that now.
“You take it for granted you’re going to have a healthy child. She is healthy but it’s a condition that affects absolutely every part of her daily life like getting dressed or going to the toilet.”
Halle, though, is a determined young girl. And her older brother Theo (6) remains an inspiration for her despite her condition.
“She does her damndest to do what he does but with great difficulty,” added Fran.
To donate to the campaign, visit: http://www.treeofhope.org.uk/halleswish/.