Teesside Trust worker Jayne Headland is putting her best foot forward to raise money for a charity close to her heart – by taking part in the Great North Run.
Jayne, 39, will be pounding the streets next weekend to help the Heel and Toe charity, which provides therapies to children with disabilities across the North East.
“My daughter, Paige, has a very rare genetic disorder, and accesses therapy through the charity, including physio on horseback – which is truly amazing,” said Jayne.
“Her body is usually very stiff, and she finds it difficult to move, but the movement of the horse helps to relax and stabilise her muscles. It’s fantastic and she loves it.”
Diagnosis of rare condition
Paige, six, suffers from a range of medical issues including decreased muscle tone, spasticity causing stiff muscles and some global developmental delays.
Jayne and her family struggled for years to find out what was wrong, but test after test came back clear until last year – when Paige was diagnosed with CTNNB1 syndrome.
The youngster is currently unable to walk, due to the impact the condition has on her muscles, but, following double hip surgery, she is now crawling “all over”.
“Her cognition and understanding are absolutely there, and she is desperate to talk and communicate with people. One day hopefully it will happen,” said Jayne.
“CTNNB1 is a very rare, severe, genetic neurodevelopmental disorder. It was only discovered in 2012 and fewer than 500 people globally have the diagnosis.
“Currently only supportive care is available, but therapeutic research is advancing, and Paige has really benefitted from the help of Heel and Toe activities.”
Running to raise awareness and funds
Jayne, a business intelligence and clinical coding manager with our Trust, is determined to raise “as much as possible” in the GNR – despite only taking up running in January.
And, while juggling the demands of a busy work and family life, she has managed to go from taking just 1,000 steps a day to running miles on roads and country paths.
“I wasn’t at all fit when I started,” she said. “I rarely exercised and was behind a computer all day every day. If I can do this, anyone can.”
Jayne took up running with the support of the Facebook page Sisters are Doing It, which offered a 10-week beginners’ course for people interested in the sport.
She gradually built up her tolerance with stop/start running – running for 30 seconds and walking for a minute – and now tries to increase her runs by a mile a week.
“When I saw Heel and Toe were running a competition to win a place in the GNR, I kind of entered as a joke – but then I won and thought ‘let’s go for it’,” said Jayne.
“I never dreamed I’d be doing the GNR, but I’m determined to run as much of it as I can and do my best. It’s a tick off my bucket list before reaching 40 next year too.”
Creating hope for the future
The mum-of-two will be donating the first £200 of the money she raises to Heel and Toe, with the rest going into a therapy pot to help Paige access on-going support.
“We have put Paige’s name forward for gene therapy, and she is enrolled in a clinical study in Spain. We are learning more every day about her condition,” said Jayne.
“I’m hoping my run will help raise awareness about her condition and the Heel and Toe charity. I can’t praise them highly enough – what they do is life-changing.”
Jayne is aiming to continue running after the GNR and is planning to sign up to the TEWV 10k next year – among other challenges.
“I’ve had amazing support from my Trust colleagues since Paige’s birth, as well as our Working Carers Network. I couldn’t have managed otherwise,” she said.
“I do believe that things happen for a reason, and that we’re on this journey together. With the support of others, we can learn new things and share this knowledge.”
- You can sponsor Jayne’s GNR challenge via her fundraising page. A video of Paige enjoying hippotherapy can be viewed on Heel and Toe’s YouTube channel.
