We walk for Iyrah. We walk for BPAN.

lacie faux is raising money for Action for BPAN

Story

Hello you lot, I'm sat with a cup of coffee and a tissue whilst I write our story.

I say 'our' story because it is. We, as a family are in this together.

As you all know I am a VERY proud aunty to all of the girls, but today I'm just going to be talking about Iyrah. Incredible Iyrah.

Iyrah is funny, happy, loving, unique, strong, a blessing, a sister, a daughter an 8 year old little girl.

In 2023, Iyrah was diagnosed with Beta-propeller Protein-associated Neurodegeneration (BPAN). So, what is BPAN? BPAN is a rare and devastating condition that impacts every aspect of a child’s life. Its symptoms are heartbreaking: 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.

Just devastating.

No one had ever really heard of BPAN, I know as a family we hadn't and unfortunately at the moment, there is no cure. I say at the moment because it is possible, nothing is impossible. If we raise awareness and funds - more research can be completed and we will make strides towards our end goal.

On the 21st June - we walk for Iyrah. Family and friends are trekking up Snowdon to help raise money for the incredible charity - Action for BPAN.

Iyrah is incredible. Anyone who has ever met her will say the same. So please, please donate anything you can to help us help them.