Max and Milo: Life with XLH - Couverture souple

Jones, Rachael

Couverture souple

ISBN 10 : 0578982137 ISBN 13 : 9780578982137

Editeur : Pikes Peak Press, 2021

Synopsis

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.

A propos du livre

À propos de l?auteur

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.

Détails de l'édition

• Éditeur: Pikes Peak Press
• Date d'édition: 2021
• Langue: anglais
• ISBN 10: 0578982137
• ISBN 13: 9780578982137
• Reliure: Broché
• Illustrateur: Davis Lydia
• Nombre de pages: 29
• Coordonnées du fabricant: non disponible
• Personne responsable: non disponible