Very sadly we have been given news that no parent ever wants to hear. Our wonderful little girl, Flo, has been diagnosed with a serious, life-limiting brain condition known as Beta-propeller protein-associated Neurodegeneration (BPAN).

BPAN is an extremely rare and devastating condition that impacts every aspect of a child’s life. Its symptoms are heart-breaking: as iron builds up in their brains, children with BPAN often lose their ability to walk, talk, and move. They endure complex, prolonged seizures, severe motor difficulties, and cognitive decline. As the condition progresses, they also develop symptoms of Dementia and Parkinson’s disease—illnesses typically associated with old age.

Unfortunately we can already see the effects of BPAN present in Flo now. At age 6 her speech is extremely limited and often difficult to understand, she is diagnosed autistic and she has already suffered from seizures. Flo’s hard fought victories will one day be taken away from her, when the cognitive decline from BPAN begins. It’s not possible to predict when Flo’s condition will start to deteriorate, only that it will happen at some point during her adolescence.

This news has come as a huge shock to us all. It feels as though our family’s future has been snatched away.

Despite all her difficulties our girl is so happy and blissfully unaware of her diagnosis. She is a typical little girl who loves colouring, bubbles, making cakes, dancing (when she thinks no one is looking!) and ice-cream! She is the best big sister to Bea. Flo’s cheeky smile and loud infectious laugh brings so much joy to us all. It’s been difficult coming to terms with this diagnosis, especially knowing what the future holds. It hurts my heart to know that one day Bea will lose her big sister, her best friend.

We want to ensure that Flo leads the happiest life that she can, and continues making mischief with Bea for as long as possible!

With that in mind, please donate if you feel that you are able to 🤍

Myself and Jack are joining Action for BPAN in their first fundraising efforts as a new UK registered charity, and climbing Snowdon this June! 🗻 Action for BPAN is dedicated to helping fund research for new treatments and to fight for a cure.

THANK YOU so much for taking time to read about our girl 🤍

Kelly (Flo & Bea’s mummy!) xx