“Paige is a fighter. Her smile lights up every room, and her strength inspires everyone who meets her.”
Paige Headland is one of 500 people in the world to be diagnosed with CTNNB1 Syndrome
A major fundraising drive has been launched to help a seven year-old girl battling 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’s mum Jayne grew up in Bangor but now lives in the north east of England with husband Craig and the couple’s other daughter Amelia, aged 8.
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Diagnosed when she was just five years old, there is currently no cure for Paige’s condition. CTNNB1 Syndrome was only discovered in 2012.
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.
She explained: “From the very beginning, we knew that Paige was precious — full of light, laughter, and determination. But as she grew, we began to notice she wasn’t meeting certain 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. 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.”
“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.”
In November 2023, Paige underwent double hip surgery to get her hips back into the correct position. Recovery was tough, and while the surgery was necessary, it initially increased her spasticity and reduced her mobility.
Since having the metalwork removed in July 2025, Jayne says Paige has made incredible progress through weekly private physiotherapy adding: “Every small step forward is a huge victory — but we know there’s still a long road ahead.”
The family have now been told that Paige could be eligible to be included in the first group of children being put forward for a groundbreaking clinical trial in Slovenia at a cost of €165,000.
Her mum added: “This treatment could be truly life-changing, offering children like Paige the possibility of improved mobility, communication and independence. 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.”
As 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.
“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. Right now, there is no cure — only supportive therapies to manage symptoms. But for the first time, there is real hope,” Jayne added.
“Because these are ‘orphan diseases’ (rare conditions) they are often overlooked by large pharmaceutical companies, leaving it to parents and small research groups to drive progress. Much of the funding so far has come from the tireless efforts of families and a handful of corporate and government supporters worldwide.”
Jayne recently put her best foot forward when she completed the Great North Run to raise funds for Paige’s physiotherapy treatment. The family have also set up a GoFundMe page while many relatives and friends back in North Down are also helping to raise money to give Paige this chance at gene therapy.
They are holding an event, Brass and Voices in Holywood Parish Church on Saturday, March 14. 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, who will also be attending alongside her family.
Jayne added: “We are determined to do everything possible to give Paige this chance — but we can’t do it alone. Every donation, no matter how small, brings us one step closer to giving Paige — and other children like her — the chance at a brighter, freer future full of possibilities.
“Paige is a fighter. Her smile lights up every room, and her strength inspires everyone who meets her. With your support, we can give her the opportunity to take part in this groundbreaking therapy and show the world just how incredible these children truly are.”
You can support the family’s fundraiser here.
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