Reposting after accidentally being kicked :)
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Thanks for planning this event, Bob, and we are super excited that you have selected Emily as one of the club's "charities" this year.
Here's a little bit about Emily's story:
== Emily Hope ==
I can't seem to get the image to post, so here's a link:
http://picasaweb.google.com/lh/photo/EG ... directlink July 15, 2005 was an incredible day - full of hope and anticipation. We were about to have our 3rd baby girl. Her name, Emily Hope Lee.
At five weeks old we brought Emily in to get an EMG because we felt she was not developing normally. The EMG determined that Emily also has Spinal Muscular Atrophy (SMA).
SMA:
- #1 genetic killer of children
- a degenerative problem that affects the motor nerves, resulting in muscle wasting and weakness.
- occurs in approximately one in 6,000 -10,000 live births
The rest of Emily's life has been a hurricane of events from drug studies to hospital stays. Within one year Emily had lost her ability to swallow, breath adequately while sleeping, and was not able to cough adequately b/c her muscles had grown so weak. She became dependent on a BiPAP breathing machine when sleeping, dependent on a feeding tube for all nutrition, and a host of other medical devices that help us sustain her life.
Despite numerous hospitalizations, life support, and many other difficulties Emily has outlived her prognosis and is now 5 years old! Today she attends school 3-5 times a week, drives a power chair, enjoys our family and especially her big sister, and enjoys so much as she participates in the world around her... with our help of course.
The emotional, physical, spiritual, and financial wake of dealing with a disease like SMA is messy at best. But, we find great comfort in our faith, family, friends, community, and our hope for a cure within Emily's lifetime.
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Emily is the youngest of three girls -- Annabelle, Linnea, Emily -- Annabelle is the best big sister in the world and at nearly 9 she is Emily's biggest fan and supporter. Linnea would turn 8 this year, but she passed away from SMA in 2004. We miss her each and every day --- so, needless to say, we are unfortunate veterans of this disease.
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I have had the chance to get to know Bob through Ryan Wagner this past year and when we bought our diesel handicap van he was the logical expert to hire to work on it - and he has been most helpful. In our chats we talked about the Mustang Club and the possibility of a charity event. Wow - it is awesome that Emily is the lucky girl to get the clubs attention.
We look forward to participating in the event, and having a "fancy" ride for Emily to enjoy on our many roa trips, b/c Emily LOVES riding in her van -- she's an adventurous little girl.
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Additionally, to help other families impacted by SMA we formed Eminnea, Inc., a nonprofit serving families with web-based communication tools, computer support, and other initiatives aimed at equipping families with the knowledge and tools needed to navigate the often difficult roads that come with SMA. You can visit us at
http://www.eminnea.org to read more about what we've been up to.
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