At the Head of the Herd is… Deb Ayres, President, The Avalon Foundation.
Deb advocates for… patients with pediatric hypophosphatasia (HPP) and their families.
Deb is located in… Toledo, Ohio.
How Deb got here… When my daughter Avalon (“Avie”) was ten years old, she started treatment for HPP and it was really challenging for her. The treatment can be incredibly painful and have a lot of adverse effects, and you don’t really see results for a couple of months, so compliance can be really difficult, especially for kids. I remember Avie saying to me “I know how to live with my disease. I don’t know how to live with this treatment.”
One of the things that gave Avie the courage to keep going and stick with the treatment was a “Pain Box” that her grandma made for her. The box had incentives in it as rewards for Avie when she completed treatments each week, and those incentives really helped to get her through treatment and get her to the point where she started to see results. When she started treatment she was using a wheelchair, then all of the sudden she could get both feet off the ground a little bit, and then she could start to run a little bit. After that, the motivation to keep going was there, but it’s especially difficult at the beginning when you’re going through so much and not seeing results yet.
Once Avie got past all the pain to the point where she was seeing the results of the treatment, she expressed to us, “I don’t know how kids younger than me or without the support from family that I have would do this. I want to do this for every kid that starts this treatment.” And that’s how The Avalon Foundation got started, it was really her brainchild.
To read the rest of Deb’s story, which was highlighted on NORD (National Organization for Rare Disorders), click here!