Kids Caring For Kids with rare diseases
When Avalon Budd was 10 years old, she began a treatment for an extremely rare metabolic disease called Hypophosphatasia (HPP), commonly known as “soft bones.”
Avalon had been living with HPP without any hope of treatment, but the FDA finally approved an enzyme replacement therapy (ERT) that consists of several injections per week, dramatically improving the quality of life for children living with HPP.
The effects of treatment
Those first three months of treatment were excruciatingly painful, filled with side effects and adverse reactions. Avalon insisted on giving up…until her family put together an incentive plan they called a “PainBox,” reminding her that the payoff would be worth it. The PainBox encouraged her to continue the treatment, a protocol which she follows to this day, for the rest of her life.
“I remember the day when she got a ¼ inch off the ground…she could never jump or run before,” said Avalon’s mother, Deborah Ayres, President of the foundation. “She went from a wheelchair part-time to the volleyball court in just six months! It was amazing, but it was also a heart-wrenching journey, not unique to us.”
Avalon immediately felt the desire to share her incentive with other kids going through the same thing. Avalon, her family, and a group of friends joined together, and The Avalon Foundation, a 501(c)(3) nonprofit, was born.
The goal of the #PainBox is to provide psycho-emotional help to patients and families beginning ERT. This support program was created by the Kids Caring for Kids (kc4k) Advisory Board with the guidance and expertise of a group of licensed professionals to address the needs of the entire family during this time of critical transition.
After patients and families learn about The Avalon Foundation through various advocacy groups, they fill out a patient profile created by kc4k that details the patient’s challenges, likes, and dislikes so that the team can tailor the #PainBox specifically to the patient and his/her family.
The team of kids then plans, budgets, shops, wraps and organizes the incentive schedule in a personalized way for the patient and the patient’s family. Parents and patients extol the powerful success of the program because it is executed by kids — peer-to-peer caring is the key.
“Kids this age have such great ideas and passion; they just need the outlet to give to the world,” explains Jennifer Gruber, founding board member and current Program Director. And from this, grew the kc4k Leadership Program.
Kc4k Leadership Program
While under the guidance of the adult Board of Directors, the kc4k Leadership Program offers a formal way for young people to learn and grow while helping other kids.
The Avalon Foundation relies heavily on volunteers of all ages–the board currently has approximately 10 members ages 10 to 16–and is a great opportunity for children and teens to give back and support struggling families in the Toledo area. The kids are currently planning an upcoming recruiting event this summer.
Visit KidsCaringForKids.org to learn more.