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.
Rubber Band Girl is a heartwarming story of a mother and daughter who never give up on life or on each other. Because of its honesty, positive tone, and happy ending, it will find an eager audience with any parent who has struggled with the health challenges of a child.
Jennifer Nielson graduated Summa Cum Laude from Arizona State University with a degree in elementary education. A self-proclaimed “recovering perfectionist,” she has learned to fuse her creativity and energy to raise a family, teach music, and produce a successful home-based interior design business. She lives in Gilbert, Arizona, with her husband, Talan, and their five children.
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Jennifer Barney Nielson is a small business owner and piano teacher. She stays busy serving in her church, but her greatest and most fulfilling role is that of being a mother to her four beautiful and happy children, Hayden (16), Hadley (14), Griffin (10), and Lincoln (6).
Life is rarely a fairy tale. But there are lessons to be learned from those timeless characters who faced overwhelming obstacles before reaching their “happily ever afters.” From Red Riding Hood’s big bad wolf to Cinderella’s evil stepmother to the billy goats’ troll under the bridge, it is triumph over opposition that makes these stories worth telling. So it is that these seemingly insurmountable obstacles in our path are often the gateways to our happy endings.
My very own princess, Hadley, has come up against her share of trolls under the bridge. Diagnosed with Marfan Syndrome at a young age, Hadley has experienced many obstacles associated with the condition. But while Marfan’s can be debilitating and even life-threatening, Hadley has seen her life as nothing but a fairy tale.
Hadley started out as an “average” baby girl, although that would be the last time that adjective could accurately describe her. Like Jack and the Beanstalk, Hadley seemed to have her own supply of magic beans: Once she started growing, she kept growing, and growing, and growing.
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Book Description Hardcover. Condition: New. Seller Inventory # Abebooks576097
Book Description Condition: New. New. In shrink wrap. Looks like an interesting title! 0.5. Seller Inventory # Q-193745813X