Rubber band girl
Subtitle: a mother's memoir
By: Jennifer Nielson
Publisher: Sourced Media Books, LLC
Published: 2013
Place of publication: San Clemente, CA
Language: eng
Number of pages: 134
ISBN-13: 9781937458133
Copyright date: 2013
Subjects: Marfan syndrome; Biography; Patients; Mothers and daughters; Children with disabilities
Description: Rubber Band Girl is a heartwarming story of a mother and daughter who never give up on life or on each other.  Marfan Syndrome, or "Rubber Band Disease," as it is commonly called, has taken the lives of too many, too soon.  A disease that attacks the ligaments of the body, it is associated with heart and vision problems, extreme flexibility of the joints, and, its most noticeable feature, excessive height.  In this inspiring memoir, Jennifer Nielson recounts her journey as the mother of Hadley, a beautiful young girl with Marfan Syndrome. Together, they climb the mountains of life-threatening health problems and endless doctor visits. Together, they travel through the deep valleys of sorrow and loss. Together, they successfully manage Marfan's-and forge an unbreakable bond in the process.