Butterflies, Purple Tulips & U2
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Aimee suffered from a very rare skin disease called epidermolysis bullosa; this is a disease that is extremely painful and also lethal. Life expectancy is short for those with epidermolysis bullosa. And Aimee lost her battle with her disease in December 2006 at the age of thirty-four. Butterflies, Purple Tulips and U2 is a combination of memories from both Sandra and Aimee. The author recalls memories of her daughter's childhood and then onto becoming an adult. The difficulties they had in finding help for this rare disease and how grateful they were when help came, the hope is that those who ...
Aimee suffered from a very rare skin disease called epidermolysis bullosa; this is a disease that is extremely painful and also lethal. Life expectancy is short for those with epidermolysis bullosa. And Aimee lost her battle with her disease in December 2006 at the age of thirty-four. Butterflies, Purple Tulips and U2 is a combination of memories from both Sandra and Aimee. The author recalls memories of her daughter's childhood and then onto becoming an adult. The difficulties they had in finding help for this rare disease and how grateful they were when help came, the hope is that those who are suffering now or those to be born with EB will find helpful information and resources in Aimee's story. Throughout this book, the author has sprinkled in her daughter's short stories, writings, and poems, allowing Aimee to be a part of the storytelling. Aimee was a remarkable young woman; she rarely ever complained and worked hard at balancing her disease and the life she loved. I think she would want people to remember her accomplishments and her enjoyment in each day. She had great faith and loved those around her and in return was loved by many.
