Adeline is 6 years old and doesn’t let HPP stop her. Diagnosed at two weeks old, her family connected with Soft Bones, Alexion, and fellow patients to get the necessary support and information she needed. Despite a list of medical conditions on top of her HPP diagnosis, her family is hopeful. Learn more about Adeline’s hobbies and experiences as she learns to advocate for herself.

Read more about Adeline's story here.

Donations in Adeline's honor may be made using this page or mailed to

Soft Bones Inc., 141 Hawkins Place #267, Boonton, NJ 07005.

Soft Bones is a 501c3 that supports patients living with hypophosphatasia or HPP, a rare bone disease. People living with HPP can have soft bones and be prone to fractures by performing simple everyday tasks, like fracturing a femur by rolling over in bed or getting a leg stuck between the sheets. One of the most common symptoms of HPP is early tooth loss, young children lose their teeth early (with the root intact) and can have lifelong problems with dental health, impacting their confidence and self-esteem. Other patients live with chronic, debilitating pain that prohibits them from enjoying simple things in life.