Bertie’s charity Match for BPAN

Want to join me in making a difference? I’m raising money to benefit Action For BPAN, and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to Bertie’s Family.

More information about Action For BPAN: Action for BPAN is the first UK charity focused on funding research for a cure or treatment for Beta-propeller Protein-associated Neurodegeneration (BPAN). We are dedicated to making a lasting impact in the lives of families affected by this devastating condition by providing support, information and by advocating for this rare disease.​ Join us in our mission to fund vital research and raise awareness about BPAN. UK Charity number 1210529 Gift Aid Number ZD35568

Berties Story.

Our son Bertie was born on the 28th of February, 2021. His arrival wasn’t straightforward—after my waters leaked at 32 weeks, we made it to 37 weeks with constant hospital visits. He was born naturally but with ABO incompatibility jaundice, and we spent the first week of his life in hospital during the height of Covid, separated from his three big brothers. Despite those challenges, Bertie was a beautiful, happy baby, our family was complete.

As Bertie grew, we started noticing he wasn’t hitting his milestones like other babies. At nine months, he couldn’t sit, roll, or babble. Later, seizures began—terrifying moments where we feared he would lose the little skills he’d worked so hard to gain in physio. But through every challenge, Bertie has shown such determination. He’s learned to roll, to bum shuffle across the room, to wave, and he even says “mum.” Every single step has been hard fought, and every one has been a victory.

In February this year, we got the news that changed everything: Bertie was diagnosed with BPAN—Beta-propeller Protein-Associated Neurodegeneration. It’s a cruel, rare, and terminal condition caused by a gene mutation. Without treatment, it slowly takes everything away. Being told this diagnosis was like having the ground fall away beneath us. As a parent, all I ever wanted was for my child to be safe, to be healthy. I said to everyone: “I don’t care what it is, as long as it’s not life-threatening.” And yet, this was the one we got. It was only then that we learned Bertie was never supposed to make it through pregnancy. But he did. He fought his way here. He is a miracle.

But Bertie is so much more than a diagnosis. He is pure love. He is laughter. He is light. He has taught us patience, kindness, and how to communicate without words. He smiles the biggest smile despite every challenge life throws his way. He is our miracle. All he knows is love—and that love touches everyone who meets him.

But there is hope. Action for BPAN is funding groundbreaking gene therapy research that could save Bertie’s life. This isn’t a dream—it’s real, it’s happening, and with enough support, it can reach children like Bertie in time.

This is why we need your help. Every single penny donated goes towards saving Bertie’s life—and the lives of other children living with BPAN. You can be part of his miracle.

From the bottom of our hearts, thank you to everyone who has already donated, and thank you to everyone who will. You are not just giving to a cause—you are helping to save our son’s life, and the lives of countless other children with BPAN.

Please donate today and help us save our boys life.