Our daughter Poppy is now 9 years old. Her laugh is infectious and her smile is so bright that when she walks in a room it lights up. In November 2019 we were given a shocking and devastating diagnosis about her condition, that has changed our family’s life forever. Poppy has Beta-propeller Protein-associated Neurodegeneration, or BPAN a degenerative brain disease and currently there is no cure.

This means Poppy will always have a development delay, and epilepsy but in adolescence her condition will worsen and she will regress. The onset of Parkinson’s and dementia like symptoms will persist and this condition will shorten her life significantly.

There are between 1000-1500 children worldwide that had been diagnosed with this disease. The testing is relatively new and so it seems every day, another child is being diagnosed with this debilitating and life limiting condition. With this new genetic screening, there will be many more children diagnosed in the future.

Action for BPAN is the first UK charity focused on funding research for a cure or treatment for Beta-propeller Protein-associated Neurodegeneration. The charity is dedicated to making a lasting impact in the lives of families affected by this devastating condition.

In 2025 I will attempt to swim 100 miles or 161 km equivalent to 6438 length of my local swimming pool. Averaging just over 8 miles a month. I intend to keep a log of my swim and will update everyone monthly.

Please help raise awareness and funds for further research, whatever you can spare or if you are thinking of raising money for something yourself this year, please let it be for BPAN 🙏.

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