Meet Abby and Belle: 2019 Family Advocacy Day Child Champions
Belle and Abby are participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Belle and Abby will share information about their health journey and the importance of children’s health care with members of Congress. Below is their story.
Meet Belle and Abby—two sisters who have endless love for others, especially each other. When Belle was 5 years old, genetic tests showed that she had Niemann- Pick Disease Type C1 (NPC1). NPC1, often referred to as childhood Alzheimer’s, is a rare, degenerative genetic disease affecting all cells of the body. Due to the genetic nature of the disease, Abby underwent testing as well—she also had NPC1.
This special family used to travel from their home in Texas all the way to Chicago biweekly to access the closest hospital administering the only clinical trial for NPC1, but Dell Children’s Medical Center changed all of that. The team at Dell Children’s worked hard to begin their own trial so the Andrews would only have to drive a short distance to access treatment and so care was available to other children in the region as well.
Abby and Belle both love the nurses at Dell Children’s and are so happy they don’t have to navigate airports by wheelchair every other week anymore. Because of the care they have received, Belle and Abby now hope they can change the future of children with NPC1!
Join us in welcoming Belle and Abby to 2019 Family Advocacy Day.