Max and Milo - Jones, Rachael
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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…mehr

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Produktbeschreibung
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. This book is great for families and children affected by XLH. It is also beneficial for teachers and school counselors to use this book to teach compassion for those who have health issues or a rare disease.
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Autorenporträt
Rachael and both her children have XLH (X-linked Hypophosphatemia). Rachael personally understands the fear and uncertainty that come with a rare disease diagnosis. Even though she had known about XLH since she was a child, she felt helpless and worried when her own children were diagnosed. Thankfully she came across patient advocacy organizations, that connected her with both a medical community and a community of fellow XLH'ers. She went from feeling helpless and fearful to feeling supported and encouraged.Rachael wrote this book, in collaboration with her children, from a desire for other children andfamilies to feel encouraged as well. She hopes that children will connect with the characters inthis book and relate with the story of someone living with XLH. Most importantly, she desiresthat children and families receive a message of hope, leading to an understanding that someoneliving with XLH can still live a full and meaningful life.