Phoenix Storms RisingThis is Phoenix,We call her Cupcake.
Her brain is filling with iron, and there is no way to get it out.This is her story.
Help Build Cupcake's HomeA journey through BPAN, strength, and unstoppable love.
Hear Cupcake's story, from her mom.
When Cupcake was born, she barely cried. She missed her milestones. For three years she woke every few hours. After genetic tests and an MRI, we finally had a name for it: BPAN.
She laughs for no reason at all.
We named her Cupcake the moment she was born. She came out so sweet, with big cheeks and a dimple on each side, and I just wanted to eat her up. She laughs for no reason at all — she'll be getting her diaper changed and just start giggling.
She doesn't know she's any different from anyone else, and I love that about her. She's free-spirited and easy to love. She adores Mickey Mouse Clubhouse, music, and anything that makes a crunchy, crinkly sound.
Her big sister and brother, Karli and Jaxson, help take care of her every single day. They meet her exactly where she is.
What is BPAN?
Cupcake has BPAN — Beta-Propeller Protein-Associated Neurodegeneration. It is caused by a change in a single gene, and it was only discovered in 2012. Her brain slowly builds up iron, and there is no way to release it. It causes seizures, developmental delays, and over time a loss of the abilities she has today. There is no cure. Not yet.
What We Need — A Home She Can Move Through
A wheelchair ramp
So she can get in and out of her own home.
A bigger bedroom
So all of her equipment fits in one place.
Her own bathroom
So she can be cared for safely.
Our home has stairs, carpet, and narrow hallways. Her walker doesn't fit, and she can't move freely in the only home she's ever known. We're raising money to change that.
