Rubber Band Girl (book review)

affiliate links included

Rubber Band Girl

was written by Jennifer Nielson.

From Sourced Media Books:

In this heartwarming story, 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, loss, and sorrow--and forge an unbreakable bond in the process. Because of its honesty, positive tone, and happy ending, Rubber Band Girl will find an eager audience with parents and caretakers who have struggled with the health challenges or special needs of a child.

Marfan Syndrome, or “Rubber Band Disease” as it is commonly called, is a disorder of the connective tissue that creates extreme height and an enlarged aorta that can cause sudden death if the condition is not diagnosed and treated. This multi-system disorder can affect the heart, blood vessels, bones, joints, eyes, lungs, and skin.

I received an e-mail with the description above and was immediately excited to read Rubber Band Girl.  We know a little girl named Cassie who has Marfan Syndrome.  Cassie is 6 years old and just recently had surgery to repair her mitral valve.  During her surgery, Cassie's mom started a blog to keep friends and family updated... and I became slightly obsessed with keeping track of Cassie's progress and recovery.  I find that when things effect people I know... I want to know more and more.  I want to be informed.  And so... when this book arrived right around Cassie's heart surgery I jumped right in and hoped to learn more.

I don't want to say I was disappointed (because it was the heartwarming story about Hadley that the description said it would be)... but the book wasn't what I was hoping it would be.  It is what it says it is... a memoir.  It's a written account of a mom's memories.  There is a little information about Marfan Syndrome (not much more than what is in the book description, video & on the website) and a lot of little stories about Hadley.

If you are a person who loves memoirs, you'll most likely love Rubber Band Girl.  If you're a person who is looking to learn more about Marfan Syndrome, I would probably look elsewhere (I could even e-mail you the link to the blog about Cassie).

AND... if you're looking to donate to a fabulous cause... our friend Cassie's parents are running in their 4th annual half-marathon to raise money for the National Marfan Foundation.