Hi! I am Bianca’s caretaker and her family and I would love to update the family story page and add some new pictures 🙂 Pics are attached below along with her family story. 

Bianca is truly one of a kind. She is incredibly social and loves being around people. She loves doing her makeup, going shopping, painting, crafts, listening to music and throwback Disney videos, and being included in whatever everyone else is doing. She has a way of making an ordinary outing feel like an event and has brought so much happiness, laughter, and perspective into our lives.

Living with PA means that Bianca requires care and supervision throughout her day. Her nutrition has to be carefully managed, and she receives formula through her feeding tube on a strict schedule. Her hydration, medications, feeds, and overall health all require close attention. PA has also affected Bianca developmentally, and she needs support in different areas of daily life.

Still, there is so much that Bianca can do and, more importantly, so much that she enjoys doing. She works on activities that encourage her independence and keep her active and engaged. Her days can include practicing math, painting and crafts, spending time outside, running errands, going shopping, or simply spending time with the people she loves.

Over the years, PA has brought challenges that most families never expect to face. There are appointments, specialists, feeding pumps, medical supplies, medications, carefully measured nutrition, and the constant awareness that Bianca’s body processes certain nutrients differently. There is a level of planning behind everyday life that most people never see.
But those things are only one side of Bianca’s life.
When we think of Bianca, we do not first think about Propionic Acidemia. We think about her personality. We think about the things that make her laugh, the places she loves to go, the people she loves, and the way she has touched the lives of so many people around her.

Bianca is surrounded by a family and community who absolutely adore her. She has taught all of us that accomplishments do not have to look the same for everyone. We celebrate her progress, her independence, her happiness, and most of all, the person she has become.

Propionic Acidemia is rare and awareness matters. Behind every diagnosis is a person and a family whose lives have been changed by PA. We hope that by sharing Bianca, more people will learn what PA is, support the families living with it, and support the research that could change the future for children and adults with this disorder.

PA will always be part of Bianca’s story, but anyone lucky enough to know her knows there is so much more to Bianca than PA.