portada Eleven Months & Twelve Days: Christopher's Story (en Inglés)

Eleven Months & Twelve Days: Christopher's Story (en Inglés)

Formato

Libro Físico

Autor

Kathie Strawn-Frazier

Editorial

Braughler Books, LLC

Idioma

Inglés

N° páginas

136

Encuadernación

Tapa Blanda

Dimensiones

21.6x14x0.7 cm

Peso

0.16 kg.

ISBN13

9781955791663

Categorías

Memorias
Neurología y neurofisiología clínicas
Hacer frente a la enfermedad y a problemas de salud concretos

Eleven Months & Twelve Days: Christopher's Story (en Inglés)

Kathie Strawn-Frazier (Autor) · Braughler Books, LLC · Tapa Blanda

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Reseña del libro "Eleven Months & Twelve Days: Christopher's Story (en Inglés)"

11 months and 12 days is how long her oldest son Christopher lived. In 1977, he was diagnosed with a very rare and fatal disease and two months later, he died.It was twenty years before Kathie Strawn-Frazier learned the name of the disease that took Christopher's life-Krabbe Leukodystrophy. "Krabbe Disease," as it is more commonly known, is a rare, inherited metabolic disorder that results from the loss of myelin in the nervous system. The most common form affects children before the age of one and can be so severe that most children rarely survive beyond the age of two. To date, there is no known cure for Krabbe Disease.Kathie Strawn-Frazier still grieves for Christopher; sometimes it hits her so hard, it's like it's still so very fresh. She wrote this book hoping to help other young parents feel less alone after receiving such heartbreaking news about their infant. In recent years, she has been advocating for newborn screening of Krabbe Leukodystrophy.A portion of the proceeds from this book will be donated to KrabbeConnect to help in the search for a cure for Krabbe Leukodystrophy.