The future is looking brighter for a little girl with a lot of courage – thanks to the love and support of people across the North East.
Six-year-old Paige, daughter of our Trust worker Jayne Headland, was born with a rare genetic disorder which affects her movement and speech.
The youngster struggled to walk or talk, due to the impact on her muscles, but is now making “great progress” – with the help of extra physio paid for with kindness.
“People really seem to have taken Paige to their hearts,” said Jayne, who took part in the Great North Run last month to raise awareness of her daughter’s condition.
“I was aiming to raise money for a charity which supports Paige with the run, and perhaps a little bit more for some extra physio sessions, but I never expected the response we’ve had!”
Love and support for Paige
Dozens of well-wishers across the North East pledged their support and, after raising a staggering £3,000, Jayne has now booked a whole raft of treatments for Paige.
“When I was doing the GNR I kept getting emotional, thinking about how I was doing these steps to help Paige take her own,” said Jayne, from Teesside.
“I had to fight down the tears at some points. People have been so kind, so generous, and the extra physio is really helping.
“Paige has just taken her first steps since undergoing a hip operation two years ago, and it’s absolutely amazing. We are all over the moon.”
Difficulties in securing diagnosis
Paige was born with severe medical issues, including decreased muscle tone, spasticity causing stiff muscles and some global developmental delays.
Jayne and her family fought for years to find out what was exactly wrong, but Paige was only diagnosed with CTNNB1 syndrome last year.
She underwent double hip surgery in 2023 and, following the recent removal of metalwork from the operation, she is now learning to walk.
“With the freedom from metalwork and the help of the weekly physio, Paige can comfortably get on her standing frame now,” said Jayne.
“Her sister was stood dancing with her the other day, which was so emotional. Now that she can get herself into an upright position, she can also give the best hugs. It’s wonderful.
“Paige is very brave. She just gets on with things, and it’s only later that you realise she must have been in pain. She is always pushing herself and has such a drive to do things.”
Taking on a great running challenge
Jayne, a business intelligence and clinical coding manager with our Trust, took on the challenge of competing in the GNR despite only taking up running in January.
And, by juggling the demands of a busy work and family life, she managed to go from taking 1,000 steps a day to completing the half marathon in just 2 hours and 49 minutes.
“CTNNB1 is a very rare, severe, genetic neurodevelopmental disorder. It was only discovered in 2012 and fewer than 500 people globally have the diagnosis,” said Jayne.
“Currently there is only supportive care is available, but therapeutic research is advancing, and Paige is really benefitting from the extra physio. It was worth every step of the GNR to help her.”
Huge thanks to all who helped
The mum-of-two is aiming to continue with her running and is hoping to compete in the Belfast half marathon next year – among other challenges.
“I just want to thank everyone who has reached out to help and support us. It means the world to us and has made such a difference. We have read every message, every text,” said Jayne.
“Paige is so much happier since she started to be able to move more freely – and the extra physio is definitely a big part of that. Just to see her happier is really emotional. So amazing. Thank you everyone!”
