Avery, age 4
“When Avery started [enzyme replacement therapy] we made a bucket list of all the “ordinary” things she wanted to accomplish. One MAJOR check off on that list was climbing the ladder at the park. Not even a month after starting [treatment], she accomplished her goal!! And thanks to the PainBox Program, she was willing and able to keep up with her injections so we could witness this awesome moment!”
Cora, age 5
Cora Ingariola. diagnosed with HPP at 2 years old, is a strong little girl who keeps pushing through
Cora was diagnosed with HPP when her mom, Molly, noticed that Cora’s teeth were loose already at the age of 2. Molly decided to have Cora’s teeth checked out, and when they went to their dentist, they found out that Cora had one tooth that had never come in, so the dentist ordered bloodwork. They were then referred to their local children’s hospital, Children’s Mercy Kansas City, and one of the doctors there who specializes in HPP was able to explain the diagnosis.
Molly was grateful that they figured out what was going on with Cora; some families take years to receive a diagnosis. Once Molly heard Cora’s diagnosis, she was shocked and sad. As she started to research HPP, the rare disease started to make more sense to her.
Cora’s way of explaining to others about her disease is “it’s when your bones break easily.” She adds, “Last time I broke a bone…it hurt so bad. I couldn’t move.” Cora says that in everyday life, “I come home from school exhausted since my knees hurt so much.”
Cora, who is undergoing weekly Strensiq injections, explains, “I take shots and they hurt. It makes me feel bad because they hurt.” Cora knew that the shots were going to be painful because one of her siblings has HPP, and she saw her brother cry every time he got a shot. Opening the #PainBoxes, which are filled with incentive toys, has really helped Cora. Receiving the gifts make Cora feel like she was wanted and important in this world.
“Even though I take shots and they hurt, it’s good because it makes me feel bigger and stronger and it helps me. When I get presents [from the #KC4K #PainBox program] it makes me feel good because I know that someone is helping me.” – Cora
Now when she takes injections, she doesn’t cry and says they don’t hurt most of the time. Molly said that she has seen such a big difference in Cora from the beginning of the injections to now. At first they thought that Cora would need the injections to move around, but now with the shots, she’s running around and growing at a normal pace!
Molly and Cora are happy that #KC4K has been helping their family. Before #KC4K, it was very hard to keep track of everything and life was very stressful, but thanks to the #PainBox program and the #KC4K community, they feel like there is a team of people supporting them and there to help.
Jameson, age 13
“Jameson wants everyone to know how much the PainBox gifts and treats made something negative, starting to give himself injections, into something positive as it gave him something to look forward to. Even though he is 13 he loved sitting next to the giant bear, which he named Barry, when he did his injections. He admitted that he always wanted one of those bears when he was little and it was cool to finally have one. Barry now has a permanent spot in our living by the piano. Thank you to everyone who has donated time, money, or supplies to PainBox and to Avalon and Deborah for reaching out to make the road a little easier for the rest of us on our HPP journey.”
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Founded in 2017, The Avalon Foundation is committed to youth centered leadership development through service to families affected by rare diseases. Through our #Painbox program we provide emotional support to pediatric patients and their families during life-changing transitions.
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