Vivienne is surrounded by love, especially from her big sister, Isabella, and brother, Paxton, who simply see her as their little sister, ‘Baby Evie.’ They don’t see a diagnosis—they see their best friend, their playmate, and a part of their world. We hold onto hope that with a cure, she can have the same chance to live a long, full life alongside them.

​

Vivienne, our 20-month-old daughter, was born on April 20, 2023, completing our family of five. Her name means “ALIVE,” and she is a spark of magic—her whole body lights up when she laughs. We had a healthy pregnancy, normal checkups, and all the standard screenings. But after Mother’s Day and celebrating her 1st birthday last year, our world changed forever.

​

What began as a routine pediatrician visit for a fever quickly spiraled into an extended emergency hospital stay, an MRI, a lumbar puncture, EEG, and genetic testing. It was a surreal sight—our baby girl’s head wrapped in thick gauze, covered with a multitude of electrodes, crying as she was prodded with needles. Our hearts were weighed down with dread as tears streamed down, unable to process what was happening. Then came the crushing diagnosis: BPAN (Beta-propeller Protein-Associated Neurodegeneration).

​

BPAN is an ultra-rare X-chromosome progressive disease.
It’s unforgiving, robbing children of their time and future. Stage 1, it starts with developmental delays and seizures. Then, Stage 2 if they make it to adolescence, it turns into a nightmare—from dystonia to Parkinsonian and Rett-like symptoms, Alzheimer’s, and regression erasing everything they once knew. The most devastating truth? There is no way to stop it—yet."

​

With only about 500 diagnosed children worldwide, BPAN is too rare to attract pharmaceutical funding. No corporate research investments. That means it’s up to us—parents, families, and compassionate supporters—to make a cure possible.

​

But there is hope. A team of brilliant doctors and researchers at the Children's Hospital of Philadelphia (CHOP) have a plan: gene therapy. It could stop BPAN in its tracks. It could save Vivienne and children like her.

​

The only thing standing in the way is funding.

​

To bring this potential cure to clinical trials, we need to raise $10 million over five years—to secure the time, tools, and expertise required to give these children a fighting chance.

​

We are in a race against time. BPAN will not wait. But together, we can change Vivienne’s future and so many like her. She will be 2 this year and Vivienne’s presence has reminded us that every milestone, no matter how small, is a victory worth celebrating.

​

Please, help us fund this life-saving research and bring awareness. Every dollar brings us closer to a cure.

​

Donate today at www.BeatBPAN.org  Share. Be a part of this fight. Because every child deserves a future.

​

Love ~ Shaun, Yvette, Isabella, Paxton & Vivienne

​

#BeatBPAN #RareDiseaseDayBPAN #VivienneRedick