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Tuesday, October 26, 2010

Two Years.

Two years ago today was when the twins were diagnosed with Spinal Muscular Atrophy. Two years since we stared in disbelief at our happy one year olds while we listened to the neurologist deliver anyone's worst nightmare to us over the phone. It was entirely life changing.

SMA is a type of muscular dystrophy which affects voluntary muscles. SMA patients are weak, because they're missing a specific muscle protein. They are highly intelligent but are frequently described as "floppy" because their limbs have so little muscle tone that they flop around unless we're very careful in handling them. They cannot sit, roll, crawl, or walk. Their respiratory health is of utmost concern because they cannot produce an effective cough. Think about it--a good cough requires the cooperation of your diaphragm and other abdominal muscles. SMA patients can't cough like you or I can--in fact, many SMA babies can't swallow, or even breathe on their own. The severity of muscle weakness is broad, but the thing that all SMA patients have in common is the deletion of that SMN protein--so regardless of how severely one is affected, the same cure will cure them all.

Despite the dozens (hundreds) of families that I've come to meet and chat with who are affected by SMA, the disease is still considered rare. Because of this there are limited research dollars available to hunt down a cure or treatment. There are some extremely intriguing advancements in the fields of gene therapy and stem cell treatment, and I am on the edge of my seat every morning when I turn my computer on in hopes that a breakthrough for treating SMA will pop up on my RSS feed. So far, no luck. SMA is terminal. There is no treatment. 50% of SMA patients pass away before they turn two years old. My twins have so far beaten the odds, and I am very much aware of this every single day.

Families of SMA is our central resource for support when it comes to handling daily life with this diagnosis. FSMA not only keeps the families all networked together and provide moral support, but they fund critical research to find a cure or treatment for SMA. This year, on November 21st, the Arizona chapter of Families of SMA will host a Walk 'N Roll to Cure SMA in Scottsdale. It would mean so much to us if you could be there. We should have our wheelchair van by then, so both kiddos can show off their pink and blue wheelchairs, respectively.

If you can't attend our Walk N Roll, then consider throwing a few bucks our way via this link. If you represent a business, consider donating your product or a gift certificate for our raffle that day. Register to walk with Team Double Trouble--or submit your donation--by clicking here.

I am confident that a cure (or very effective treatment) for SMA will be discovered in my lifetime. I wake up everyday hoping that a cure for SMA will be discovered in my children's lifetimes. And the best part is that researchers think that a cure for SMA could unlock treatments or cures for other diseases, too--ALS, Duchenne's Muscular Dystrophy, and Parkinson's, specifically. The possibilities are exciting, but we need money. If you can donate money, I will take it. If you have some spare prayers, I will take those, too. Your moral support over the last two years has been critical to my sanity, and I thank you for it very much. As I continue fumbling my way through motherhood--and parenting twin toddlers with a physical disability--your continued support and shoulders to cry on and acting as sounding boards deserve their own awards.

There was a time when I cried over this every day. I don't hardly cry about it anymore--at least, not on a daily basis. Grief is exhausting, especially when my gorgeous children are still alive and happy and bring such joy to my life. I'll save the tears for later when I really need them. For now, though, life is good.

Much has changed in two years.


  1. Hope all is well with your dear ones! It is my honor to donate to Team Double Trouble, not only in my role at Dynasplint, but as a mom and future grandmother. God bless you all, especially that adorable hockey goalie in his Dynasplints!
    Suzi Pitts
    Communications Director
    Dynasplint Systems, Inc.

  2. Just wanted you to know that we linked to your donations page via our blog and facebook page!Hope it send some givers your way.

  3. Good luck with your event! I know it will be awesome!

  4. Wow, Suzi--thank you! Your gift is such a surprise and so generous! We appreciate it!