Tuesday, October 26, 2010
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.
Monday, October 25, 2010
Then, a few weeks ago Kyle was the subject of the wheelchair hazards. The accident involved him being loaded onto the school bus. It was nobody’s fault--a complete accident—but it resulted in three broken Kyle toes. He’s mostly healed now and has been such a trooper, but he seems very averse to getting back into his chair.
Keep in mind, he’s only three. He’s not a proficient driver on a good day anyway. But since his accident I just cannot convince him to get back into his chair. When he goes to school, he has no choice—he’s in his wheelchair. But at home all he wants is to sit in his high chair and not be moved. I literally have to push his high chair from the kitchen to the play room or wherever he wishes to go. I know at this point that he’s not in pain, so I suspect he’s just afraid of his wheelchair.
How to get him over his fear and back in the saddle? Or the chest harness, as it were? Anyone been there done that?
The whole thing pretty much blows chunks.
Wednesday, October 6, 2010
I've reviewed his book already if you recall, and my kids love it. If you haven't already bought a copy for your kids, consider doing that now and help out St. Mary's. It makes a great gift, too. :)
For your purchase to count towards this food drive, click and buy here. Spread the word!
Monday, October 4, 2010
(if you can't see the video above, it's because you're reading this on Facebook. Click "View Original Post" to see the original blog posting with the video.)
Saturday, October 2, 2010
Last week, Jenna (my 1st grader) and I had the following conversation:
J: What does that ribbon on our van say?
Me: “Cure SMA”
J: I changed my mind.
Me: What does that mean?
J: I don’t want to cure SMA.
Me: [involuntary gasp] Why?
J: I like hitching rides on the back of their wheelchairs. I don’t want them to ever walk. I want them to stay in wheelchairs.
Not sure why I’m sharing this. Even if a cure came tomorrow I don’t think that it would be enough to make them ever walk--They’ll be in chairs for the rest of their lives. But that she identifies their chairs as a part of them and sees them as pluses instead of minuses? Priceless.