"Not a Fire Exit"

It seems that people everywhere are touched by Zane's story and are doing their part to help. Author Christopher Finlan recently published the book "Not a Fire Exit".

The intention of the novel was to create more awareness on SMA. Not only is this evident in the plot of the book, but the book also includes a foreward written by Hillary (Zane's mommy) herself discussing her personal journey with Zane and SMA. The novel will hopefully raise awareness and reach a demographic not yet tapped. Finlan has also vowed to make donations to Families of SMA (FSMA) as people pre-order the book or follow the book on Facebook.

Visit the wesite (http://www.notafireexit.com/) to read about the book, the author, and SMA. Also make sure to read/listen to Hillary's touching foreward.

http://www.notafireexit.com/foreword.php

Sign the Petition

Moved by Zane's story yet? Find youself wishing there was some way for you to help find a cure for the #1 Genetic Killer in Children under 2?

Good news! You can! Support the SMA Treatment Acceleration Act and give babies like Zane a fighting chance to beat this horrific disease!

Follow the link below, sign the petition, and pass it on. Just a few short minutes of your time could mean a few more years in the life of a child with SMA.

http://http//www.thepetitionsite.com/182/petition-to-cure-SMA

#1 Genetic Killer in Children Under 2

So What is SMA anyway?

Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons effect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approzimently 1 in every 6000 babies born are affected, about 1 in 40 people are genetic carriers.

Babies diagnosed with SMA will develops emotionally and intellectually as a normal child. They will laugh and play and not seem sick at all. Slowly, however, everyday activities will become more difficult and and voluntary muscles will begin to fail.

To read more about SMA and see how other families are coping visit:

http://fsma.org/

Sweet Baby Zane from Clair Pruett on Vimeo.

Check out the video made for the Sweet Baby Zane fundraiser!! It speaks for itself and if this doesn't make you want to get involved, nothing will.

Meet Zane

Zane and Avery Schmid were born in January 2009 to happy parents Hillary and Keith. Family and friends describe the twin girls as both beautiful and healthy. Everything seemed to be going perfectly for the Schmid family: they were blessed with two healthy daughters. However, on the girls' one month birthday their lives drastically changed.

Hillary and Keith discuss noticing less movement from Zane. During a routine check-up they mentioned their observations and soon found themselves on their way to the emergency room. After a couple days of tests, Sweet Baby Zane was diagnosed with Spinal Muscular Atrophy (SMA) - Type I. The most devistating: the disease was fatal and most children diagnosed will not live to see their first birthday. It was at that instant that Hillary and Keith, backed strongly by family and friends, decided to fight this horrific disease.