Today is the day! Head over to Facebook, search Chase Community Giving, and
click your vote for the Gwendolyn Strong Foundation! Or visit here: http://gwendolynstrongfoundation.org/chase
GSF is committed to funding cure-focused research and has pledged the million dollars, should they win it, to SMA research and awareness. Speaking of GSF, has everyone signed the
Petition To Cure SMA?It is time. To kick. SMA's. Ass. I am begging for your vote. And I'm begging you to beg your friends for their votes. And my moderately adorable children are begging you to beg your friends to beg
their friends for their votes.
Are you new to my blog, or do you already know what Spinal Muscular Atrophy (SMA) is? It's a type of muscular dystrophy that my twins have. They're two years old. They have very low muscle tone, thanks to SMA. They cannot sit on their own; they cannot hold their heads up while laying on their tummies; they cannot crawl or walk.
They have weak breathing muscles, thanks to SMA, and do not cough. They are at high risk for respiratory illness because they can't cough any congestion out of their lungs like you probably can. Their immune systems are unaffected by SMA, but because I cannot risk them getting sick we don't go to church, don't take them to public places, skip most birthday parties, don't fly them in airplanes, don't take them to an indoor shopping mall, and NEVER take them to a routine doctor's visit during flu season. They wear pediatric paper face masks if circumstances force me to take them anywhere in public. We keep hand sanitizer at both the front and back doors, in the kitchen, in the bathrooms, and in the bedrooms. I sanitize the hot points in the house and cars--door handles, light switches, steering wheels, gear shifts--at least once per week. If I fail at any of this and they catch a germ and get congested, it means extra breathing treatments at home until they get feverish, and then we check into Phoenix Children's Hospital and prepare for about two weeks of round the clock respiratory therapy, blood draws, IV's, and NG tubes. Or worse.
Their big sister, who does not have SMA, is in kindergarten, and the school nurse is on alert for signs of the flu in her classroom or H1N1 symptoms in the rest of the population so that she can warn me to keep my kindergartner home from school. I personally supply my daughter's classroom and the nurse's office with huge bottles of hand sanitizer, along with surface sanitizer and sanitizing wipes--anything to help keep my daughter and her classmates well and prevent those germs from entering my home.
All these precautions are performed in my spare time, when I'm not administering their investigational drugs, arranging their bodies into their therapeutic standers, performing two rounds of Cough Assist per day per child, or on the phone ordering more respiratory supplies or fighting with our insurance company to pay for their drugs, their many doctor's appointments, their weekly physical therapy, their breathing machines and equipment, and their power wheelchairs.
And my twins are precocious. They talk all day long, using sophisticated vocabulary and sentence structure. I spend most of their waking hours chatting with them and fetching them whatever toy suits their fancy at that moment, and am always trying to come up with new toys and activities suited to their abilities while also stimulating their brains. (And, you know, Twittering about all of it.) Because for all they
can't do due to SMA, my twins are among the healthiest and strongest of SMA patients their age and love to keep me running all day long.
Do you wonder how I have time to even keep a blog? I sometimes do. It's because I stay awake until midnight and I wake up by 5 or 6am everyday.
With a cure--and SOON--maybe Lauren could roll her own body over in bed at night, so that I don't have to wake up every few hours to do it for her. With a cure, maybe Kyle could give me a hug. Sometimes I think that would feel nice, if he could lift his arms and grasp my neck. With a cure, maybe Gwendolyn's parents could hear the sweetest sound ever: a hearty cough. Our kids get pneumonia because they can't cough, so hearing a big cough from them whenever they feel the need is probably even better than hearing a laugh. A laugh might make us happy parents, but a cough keeps our babies
alive. But since they cannot produce a cough, we SMA families keep a $4,000 machine called a Cough Assist handy.
My kids--all SMA kids--are extremely bright kids. They see our world, they watch other kids running around, and they know their bodies aren't right. Fifty per cent of babies with SMA die before the age of two. That's a lot of bright babies who die every year. Lauren asks me every day to ride a bike. I tell her, "Maybe one day, baby girl." What else am I supposed to say? I can't bear to tell her "No."
I can't ask you to cure them. That's up to a bunch of lab rats (both figuratively and literally speaking). But I
can ask you to vote for the Gwendolyn Strong Foundation in the Chase Giving Campaign on Facebook. The million dollar prize will absolutely make the difference. Feel free to comment to this post to let me know once you've done it! Make it happen for us, folks. xoxo
