A disease that for most of my life I didn't even know existed--much less did I know I was a genetic carrier for--has dominated the entire month of February for my family. Muscular Dystrophy dominates all the months for those affected by it, of course, but February has been a particularly rough month at our house:
a $1,000 ambulance ride
a $60,000 hospital stay
+$10,000 worth of prescriptions--just a month's worth
& $20,000 worth of permanent home health equipment
Just in the span of three weeks. All for one bright kindergartner who has missed a month of school, stopped breathing, endured painful, confusing and scary medical procedures so that she could be kept alive--and she never lost her smile. Her parents and caregivers lost our smiles a few times though--the stress levels reached when coordinating and providing the care of a medically fragile child can fly off the charts.
Given that the monthly premiums for our health insurance are a couple hundred bucks and not tens of thousands of dollars, I guarantee that everyone in this country is paying for her care to some slight degree. And she is just one of two people in my household who have spinal muscular atrophy--and those two are just two of thousands of children and young adults who power through SMA (a type of muscular dystrophy) every day. Imagine these costs multiplied by the thousands of people with muscular dystrophy, every year. Does it sound to anyone else like it would be cheaper and more advantageous to all of us to simply cure it?
SMA/muscular dystrophy is not a disease of choice or vice, or the consequence of making poor life choices (not that that should matter--my point is that you have no control over a diagnosis of muscular dystrophy). It does not discriminate by income level, ethnicity, or continent. And it is not cured cheaply. Our family has recruited a group of friends and family called Double Trouble for this year's MDA fundraising Muscle Walk in Tempe but we still need your help to reach our fundraising goal of $5,000. Wish to help? Click here.
The Muscular Dystrophy Association is a 501(c)3 non-profit committed to finding treatments and cures for neuromuscular disease.
-There are 43 types of muscular dystrophy, including mitochondrial myopathy and ALS (Lou Gherig disease) which also fall under the MDA umbrella and for which the MDA funded research seeks cures and treatments.
-Since 1950, the annual MDA telethon has raised 2 billion dollars for the fight against muscle disease.
-The MDA spends $70 per minute on clinical and lab research.
-The MDA spends 77 cents of every dollar on research programs and patient and family services.
-The MDA provides moral and financial support, local support networks, and flu shots for MDA families in over 200 regions within the US--and their influence extends worldwide in terms of research opportunities.
-MDA summer camp is a week freedom at a barrier-free, wheelchair-accessible camp for children ages 6-17 with MD and spends $800 per kid to attend. The twins will be old enough to start attending in June 2014!
I cannot overstate how important the MDA is to our family. Please consider helping our cause. We want to see a cure for MD in our lifetime, and this is one of the best ways to do it.
Thank you.
