Climbing Mount Snowdon for Musa and All Children with BPAN

I am climbing Mount Snowdon to raise vital funds for research into BPAN (Beta-Propeller Protein-Associated Neurodegeneration), a rare and cruel neurodegenerative condition that affects children like our beautiful son, Musa.

Musa is a twin, and was diagnosed with BPAN when he was just 18 months old. We began to notice that he wasn’t reaching his milestones and was suffering from seizures. As the years have passed, the condition has progressed, slowly taking away so much. He now lives with frequent seizures, painful dystonia, Parkinsonian symptoms, and remains nonverbal. He is visually impaired, immobile, fed through a PEG-J tube, needs secretion management and overnight oxygen, and he suffers from scoliosis. He needs round-the-clock care for every aspect of daily life.

And yet — Musa is joy. He is light. He is patience and strength wrapped in the softest of smiles. Despite all he endures, he brings endless love and warmth to our family. His bond with his twin is unbreakable, and his presence fills our home with grace and hope.

We are determined to do everything we can to halt the progression of this devastating disease. Musa deserves more time, more comfort, more life — and so do the many other children living with BPAN. Our aim is to raise funds for research at Great Ormond Street Hospital (GOSH), where scientists and doctors are working to unlock answers, develop treatments, and move us closer to a cure.

Please support us if you can. Every donation, every message, every prayer carries us forward — up the mountain, and toward a future where children like Musa are given a fighting chance.

Thank you for standing with us.

Musa's Mum.

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 based on our own lived experience.​ Join us in our mission to fund vital research and raise awareness about BPAN.

#StepUpForBPAN #ActionForBPAN #ForeverGreatful