9781989840887 - fight!: one family's battle with the butterfly disease von kalynka-brown, valerie (3 Ergebnisse)
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Taschenbuch. Zustand: Neu. Neuware - She never stopped fighting.Valerie Kalynka-Brown's sister, Marlene, was born with an extremely rare skin disease, Epidermolysis Bullosa (EB). EB is called The Butterfly Disease because if you touch a butterfly, it's wings are either damaged or it dies. The skin of those with EB, if touched, c…auses their skin to blister or peel away, and if handled too aggressively, can even cause death. Their skin is as delicate as a butterfly's.Marlene had the most severe known form of EB. Despite this, she fought to live as normally and as fully as possible. She did things doctors told her she never would be able to such as live on her own, drive a car, and ride horses. She didn't do it alone. Without the love, sacrifice and dedication of her family, Marlene wouldn't have been able to live as fully as she did. This book is for anyone who is living with or has a loved one who is living with a debilitating disease. While there will be many tough times, there is also hope, resilience, blessings and triumphs. Marlene showed her family, friends, and the world what is possible when you refuse to accept the limitations others try to put on you.
