[SMA] Must Be Stopped

This is pretty much the first time I’ve opened up in regards to SMA and the recent effect it has had on me and my family. To start with SMA stands for Spinal Muscular Atrophy, a genetic disease that prevents the muscles surrounding the spinal cord to develop and thus prevents the person from being able to walk. The other aspect of SMA that I typically push out of my mind is that the afflicted person typically lives into their early twenties, before succumbing to lung failure.

Lucy Faye Jones was born with SMA, Type 2. She is the brightest, sweetest and funniest child you will ever meet. Just last Friday she was fitted for her future wheelchair, and what did the kid do as soon as she sat down? That’s right, grabbed the gear shift and started driving down the hall! It’s going to be a rough journey, but we are going to make it. I have to change the subject because I feel tears coming on…

In hopes of finding a cure for SMA, our Northwest chapter is having a fundraiser which I would hope anyone reading would be able to attend, whether you like me or not. Join us July 17th at Safeco Field as the Seattle Mariners take on the Texas Rangers. A portion of the ticket cost will be donated to the FSMA foundation. The key, if you would like to join us, is to order your tickets through the below link, that way the donation is secured. We will be sitting the $20 section, which might not be that great for the view, but is great for the cause. Thank you for taking the time to read.

https://oss.ticketmaster.com/html/group_corp_start.htmI?l=EN&team=mariners&owner=1697466&group=1118&err&event&customerID

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2 thoughts on “[SMA] Must Be Stopped

  1. Lucy is the most amazing child. She is loved by so many people & we will all do whatever is needed to fight this disease. I’m so proud to be her grandma & I’m proud of her parents. Sometimes life is so unfair and all we can do is fight back with all the love we have.

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