Bevis Jones

Sam Story

Our journey with the Bubble began over 30 years ago with the birth of our second son, Aaron. At the time, he was labelled as “failure to thrive”. A term used when, quite simply, doctors did not yet have the knowledge or understanding they do today.

Aaron faced a very difficult start to life, struggling for four and a half years. When he contracted chickenpox, followed shortly after by his sister Rebecca, both children became critically unwell. They were admitted to a children’s hospital in Manchester, where their conditions rapidly worsened, and they were both transferred to intensive care.

Tragically, Aaron passed away.

Soon after, the hospital recognised they could not provide the specialist care Rebecca needed, and she was transferred to Newcastle General. It was there that we became part of the Bubble family.

Rebecca spent around four months in the hospital before returning home, but for years afterwards, we continued travelling back and forth for treatment. Eventually, when it was considered safe, she underwent a bone marrow transplant. At that time, the procedure was far more dangerous and complex than it is today, and Rebecca is now thriving and is a mother to two beautiful girls.

Our eldest son, Daniel, endured unimaginable trauma, losing his brother and watching his sister fight for her life. Despite everything, he, too, has gone on to build a life of his own and is now a father to a young son.

Both Daniel and Rebecca are carriers of a rare genetic condition called CTPS1, which affects only around eight families worldwide.

Our connection with the Bubble has never left us. For over three decades, we have remained closely involved, supported by the team during our darkest times and now giving back as part of the foundation. Today, I am proud to serve as a trustee, continuing that lifelong bond.

The Bubble is not just a place, it is part of our family’s story, past, present and future.

Sam’s connection to the Bubble spans more than 30 years, rooted in his family’s deeply personal journey through loss, resilience, and hope. After losing his son Aaron and supporting his daughter Rebecca through a life-saving bone marrow transplant on at a time when treatment was far more uncertain, the Bubble became a vital part of their lives. Having experienced firsthand the challenges faced by families navigating rare genetic conditions, Sam has remained closely connected ever since. Now, as a trustee, he is passionate about giving back, using his experience to support other families, raise awareness, and ensure that no one facing a similar journey feels alone.