Max and Milo: Life with XLH - Tapa blanda

Jones, Rachael

 
9780578982137: Max and Milo: Life with XLH
Tapa blanda
ISBN 10: 0578982137 ISBN 13: 9780578982137
Editorial: Pikes Peak Press, 2021

Sinopsis

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.

"Sinopsis" puede pertenecer a otra edición de este libro.

Acerca del autor

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.

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Editorial
Pikes Peak Press
Año de publicación
2021
Idioma
Inglés
ISBN 10 
0578982137
ISBN 13 
9780578982137
Encuadernación
Tapa blanda
Ilustrador
Davis Lydia
Número de páginas
29
Contacto del fabricante
Manufactured by Amazon on behalf of the author
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