Jaspers battle with APDS | The Bubble Foundation
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Jaspers battle with APDS

Updated: April 11th, 2026

In August 2023, after five long years of uncertainty, hospital visits and unanswered questions, six year old Jasper finally received the diagnosis his family had been searching for. He has a rare primary immunodeficiency called APDS (Activated PI3K delta syndrome), caused by a mutation in the PIK3CD gene. He is currently the only known child in Wales with this diagnosis, something that can feel incredibly isolating for any family.

Jasper’s journey began when he was just eight months old. He was constantly exhausted, running high temperatures and losing his appetite. His parents, Sophie and Matt, knew something was not right. They made countless trips to the GP, went through repeated courses of antibiotics, and kept asking for answers. Still, nothing seemed to change. Jasper would often find the energy to appear well during appointments, dancing around the room with determination. For his parents, it was heartbreaking. They could see their child was unwell, yet struggled to be heard.

Everything changed thanks to the persistence of his consultant, Dr Mazah, who refused to give up. She pushed for a referral to the immunology team in Cardiff, and that decision changed the course of Jasper’s life.

Before receiving specialist care, Jasper was admitted to hospital around six times a year and relied on constant antibiotics. He was tired, vulnerable, and missing out on the childhood every child deserves. With the right care, the change was remarkable. He began sleeping through the night, his appetite returned, and he found the energy to play, dance and take part in gymnastics. Moments that once felt out of reach became part of everyday life.

To give Jasper the best chance of a healthy future, he needed a bone marrow transplant. This meant leaving home in Swansea and travelling to Newcastle, where he was cared for on Ward 3 at the Great North Children’s Hospital.

For weeks, Jasper lived in a protective bubble on the ward. He underwent chemotherapy followed by his transplant, with his dad Matt stepping forward as his donor. The journey was not without challenges. Jasper experienced complications, including dangerously low potassium levels. During his recovery, he was encouraged to eat bananas to help stabilise things. When he started to feel stronger, the now famous “Chicken Banana” video captured his humour, resilience and ability to find joy even in the hardest moments.

The team on Ward 3 became like family. They celebrated every step forward, supported Jasper through the toughest days, and brought light when it was needed most. As Sophie shared:

“We’ve had our share of tough days, long nights, and the unknowns, but Jasper has met every single moment with bravery, strength, dancing and his smile. We tried to make this experience as positive as possible for him, finding light in even the smallest and hardest moments. There have been many tears, and not every part of this has been positive, but we’ve always looked for the sunshine. And sometimes, that’s what carries you through.”

That sense of family did not end when they returned home. Today, Sophie is a proud board member of the Bubble Foundation, using her voice to raise awareness of APDS and other rare immunodeficiencies, and to support families facing similar journeys.

And Jasper? He is now full of energy, back at school with his friends, running, dancing, and enjoying life without restrictions. This year, he is even taking on four races. A powerful reminder of what is possible with the right care, at the right time.

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