By Julie Waters
A MAJOR fundraising event is to take place in Holywood to help a six year-old with one of the world’s rarest illnesses.
Little Paige Headland is one of 500 people in the world to be diagnosed with CTNNB1 Syndrome, a rare genetic condition that affects brain development, muscle tone, movement and communication.
Paige, whose mum Jayne grew up in Bangor, now lives in the north east of England and has been told she is eligible for a groundbreaking clinical trial in Slovenia at a cost of €165,000.
The event, Brass and Voices in Holywood Parish Church on March 14, is being organised by members of Jayne’s family who live in North Down.
Compere Gerry Kelly will be joined by West End star soloist Alex Sharpe as well as Festival Brass and Donaghadee Male Voice Choir for an evening of music, with all money raised going to support Paige.
Jayne paid tribute to her daughter describing her as a ‘fighter’.
“Her smile lights up every room, and her strength inspires everyone who meets her,” she said.
Diagnosed when she was just five years old, there is currently no cure for Paige’s condition. CTNNB1 Syndrome was only discovered in 2012.
“For the first time, there is real hope,” said Paige. “The CTNNB1 Foundation is about to launch a gene replacement therapy clinical trial aimed at not only halting the progression of symptoms but also restoring lost functions and supporting new developmental gains.
“This treatment could be truly life- changing, offering children like Paige the possibility of improved mobility, communication and independence.”
Jayne has now been told that Paige could be eligible to be included in the first group of children being put forward for the clinical trial.
“While this isn’t guaranteed, as there is still a screening process once the trial is approved, if accepted treatment could begin very quickly.”
However, she said: “Unfortunately, accessing this treatment comes with enormous costs. We would need to travel to Slovenia and stay for around four months, covering medical expenses, hospital admission, insurance, accommodation and lost income while away from work.”
The family have now begun a Go Fund Me Page https://gofund.me/b3d0 a5b77 and Jayne recently put her best foot forward when she completed the Great North Run to raise funds for Paige’s physiotherapy treatment.
Jayne said it wasn’t immediately clear that Paige was suffering from an illness but as she began to grow they noticed she wasn’t meeting certain developmental milestones like other children her age. “After countless tests, hospital visits and years of searching for answers, in November 2024 we finally received a diagnosis that changed everything: CTNNB1 Syndrome, a rare genetic condition that affects brain development, muscle tone, movement, and communication.
“For Paige, this means living with spasticity (stiff muscles) and dystonia (involuntary movements), as well as a heightened startle reflex that makes mobility even harder.”
Jayne said: “Paige loves being around people and is always eager to communicate, but because her speech can be difficult to understand, she often becomes frustrated and anxious when she’s away from her family. Despite these daily challenges, Paige faces life with courage, joy, and determination that inspires everyone who meets her.”
Jayne explained that because so little is known about CTNNB1, Paige is taking part in a five-year longitudinal study with the CTNNB1 Foundation, helping researchers understand the condition and how it changes over time.
The CTNNB1 Foundation, established in 2021, is a non-profit organisation dedicated to improving the lives of children with rare genetic conditions.
Said Jayne: “From what has been learned so far, for many affected individuals, symptoms can worsen with age, and hard- earned skills may be lost. Without intervention, this condition can have a severe and lasting impact on quality of life.
“Because these are ‘orphan diseases’ (rare conditons) they are often overlooked by large pharmaceutical companies, leaving it to parents and small research groups to drive progress,” sadi Jayne. “Much of the funding so far has come from the tireless efforts of families and a handful of corporate and government supporters worldwide.”
Jayne said they were determined to do everything possible to give Paige this chance at gene therapy and welcomed the support from her family in her hometown as ‘absolutely fantastic’.
