August is recognized internationally as Spinal Muscular Atrophy Awareness month. It’s a time when families affected by SMA come together as a unified front, regardless of the specific organizations we support or the philosophies we hold, to raise public awareness of this degenerative neuromuscular disease and to support research to find a cure for it.
Through Facebook, Twitter, special events, proclamations, blogs and the media, we are working together in a global, grassroots effort to spread the word that, with no treatment or cure, SMA is the #1 GENETIC KILLER of children under the age of two. That, worldwide, a child is born with this inherited disease roughly EVERY HALF HOUR. That the SMA-causing gene is unknowingly carried by nearly 10 MILLION AMERICANS. That, the more closely you are related to a person with SMA, the higher the chance is that YOU might be a carrier of that gene too.
You may have seen this information before. It’s here on this website and on others like it. That’s why I want you to be aware of MORE than just statistics. I want you to understand the real impact of this disease and why the SMA community is fighting so passionately.
Please take a moment to consider the following:
- How you would react if a doctor told you that your nine week old son would die from SMA within six months and that there was nothing you could do to save him? Imagine begging for help, being refused certain equipment, and getting the advice to simply “go home and love him.”
- How you would handle the feelings of frustration and isolation if your family and friends did not take the threat of this genetic disease seriously? How would you communicate that you are not the only carrier and that your child is not the only one who will ever be diagnosed with SMA? That, by asking them to get tested, you are not trying to scare them, but to protect them.
- What would happen if you had to quit your job to stay at home to care for your medically fragile son, even though you couldn’t afford to lose your income? Knowing that, if your child was hospitalized again, you simply wouldn’t be able to afford the bills.
- How you would respond if a stranger pointed to your daughter while you were at the store, asking “What is wrong with her?” And, you knew that, even though your child couldn’t talk or move, she understood that she is not the same as others and that she is unfairly judged for it.
- Where would you find the energy, after staying up all night with your ailing son, to fight with your insurance provider, doctors, and hospital administrators when they denied the care he so desperately needed to survive?
- What you would say if you had to explain to your three year old daughter, with tears streaming down her face, why she would never be able to walk?
- What you would do if your infant son died in your arms? Could you survive the devastation?
Then consider the strength that every single person diagnosed with SMA shows by loving, laughing and living, in spite of the disease. Are you as strong as they are?
I know that I’m asking you to think about the unthinkable. It’s uncomfortable. It’s upsetting. And, for me and everyone in the SMA community, it is very real. The situations listed above have actually happened to me or to people I know. And, they continue to happen every day.
For most families affected by this horrific disease, the acronym SMA meant nothing to us before our children were diagnosed with it. In the vast majority of cases, there was NO family history of the disease, and we were NOT offered carrier testing. We were blindsided by a diagnosis of SMA. We are now working to spread awareness to change that for you and your family.
We want you to have the power of knowledge. We want you to ask your doctor for a carrier test, even if it isn’t offered automatically. We want you to avoid being a statistic like us. We want you to be prepared. We want your children to be healthy. And, in return, we want you to help us continue the legacies of those we have lost to the disease, like my son Andy, and to keep hope alive for those still fighting.
Only through true awareness will we find a cure. Please tell someone you love about this disease today. Repost or retweet an SMA fact. Wear an SMA awareness ribbon. Do something to show that you care. If not for Andy, do it for the next child who will be diagnosed within this half-hour.