Max and Milo
Life with XLH
Max is a boy who enjoys playing with his friends, camping with his family, and going on adventures with his dog, Milo. Max also happens to have a rare disease called XLH. XLH is a rare genetic disorder that affects approximately 1 in 20,000 people and causes a variety of symptoms. Max may have to see many doctors and deal with a variety of symptoms, but he tries to live as normal a life as possible. Along the way, Max learns that he is special and rare, which is a good thing. He also learns that he doesn't have to be embarrassed by his rare condition. Max knows that XLH is something that is just a part of him but is not what defines him.
About the Author
Rachael Jones
Rachael and both her children have XLH (X-linked Hypophosphatemia). Rachael personally understands the fear and uncertainty that come with a rare disease diagnosis. She wrote this book, in collaboration with her children, from a desire for other children and families to feel encouraged as well. Most importantly, she desires that children and families receive a message of hope, leading to an understanding that someone living with XLH can still live a full and meaningful life.
XLH Resources and Information
XLH Patient Advocacy Organizations
Other XLH Resources
