Can you hear the sound of happy laughter and the whooping of a boy calling to his dog. “Jackson, Jackkkksonnnn!” The dog barks and runs back to the boy. Like an all-American picture; a boy playing outside with his mom, younger brother and his dog. Can you hear them?
Yes, this is a sound that you might hear in the small town of Lynden, Washington on most evenings and weekends. You might also hear the sound of an electric motor and wheels churning during this time of playing and fun. You see, Taysen is an 11-year old boy and he has Spinal Muscular Atrophy or SMA for short. He can’t run or jump and he moves around with the help of a motorized wheelchair.
What Do We Have to Complain About?
Stop for a moment and think about your life. I don’t know who you are, so I can’t know your life. But, you do and after you read the next few sentences I want you to do something. First, I want you to think about your life, your job, your health, your family, and the senses you have. Take 30 seconds with your eyes open and think about all of those things that I’ve listed.
Now, at the end of this sentence I want you to close your eyes for 60 full seconds and imagine your life without any of them. Go!
Did you cheat the time? Did you go the entire 60 seconds thinking about bad health, no job, no family and not being able to see, smell, touch, taste or hear? If you cheated, then close your eyes and try again.
Here’s the funny thing about imagination, no matter how hard we try to imagine, we have no idea what it’s like to suffer a loss, until we’ve really experienced it first-hand. Sure, we can feel some sadness or pity, but it’s almost impossible to put ourselves in the situation of a person who suffers from a disease, let alone one that doesn’t have a cure yet.
A Day in the Life of Taysen
Most of you who are reading this have struggles and the reality is that many of us want “feel good, quick, funny video clips” to help us get through our day. Unfortunately, SMA isn’t a laughing matter. It’s the number one genetic killer of young children. Those who are stricken with it and their families don’t want to be a burden on others. What you’ll find are self-sufficient, capable people who face this every day.
Taysen, who you met at the start of this article, is no different. Sure, you can see he’s in a motorized wheelchair, but to watch him zoom around, play, laugh and talk, you’d just see a normal, 11-year old boy. This same scene plays out around the world for the tens of thousands who face SMA every day.
Your first thought might be, “what’s the big deal, if these people are happy and able to get around?” What you don’t see in all of these homes are the sleepless nights of discomfort and pain for those with SMA. You don’t see the equipment that assists them in breathing when necessary, and for some it’s around the clock. You won’t see the parents or guardians getting them out of bed, in the bath, dressed and in their wheelchairs or caring for them. You won’t see the hours upon hours spent traveling to and visiting doctors and hospitals. You won’t see the medication
necessary to help slow down the progress of SMA. Finally, you won’t see the nights of stress on the families of those caring for ones with SMA.
How About Some Facts About SMA?
SMA is the #1 genetic killer of young children. SMA is estimated to occur in nearly 1 out of every 6,000 births. 1 in every 40 people, or nearly 10 million Americans, UNKNOWINGLY carries the gene responsible for SMA. Few have any known family history. SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender. There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders. Is there a test to determine if one is a carrier of SMA? Yes. A simple blood test will determine if you are a carrier of SMA. Both parents must be carriers for the baby to have the active form of SMA. Currently you must request this test from your doctor, as it is not yet a standard test. Visit the Claire Altman Heine Foundation for more information on carrier screening (Information from the Gwendolyn Strong Foundation)
What Can You Do?
First, you can go and get yourself tested, if you’re considering having children or more children. Why not request the test from your doctor, so you can be fully educated and have that knowledge as you move forward?
Second, finding a cure costs money. Taysen’s mom, Melodie, and friends ran in the Santa Barbara Half/Full Marathon in Santa Barbara, California on November 7, 2015, as “Team Taysen”. They were joined by a large group from around the world supporting the Gwendolyn Strong Foundation. The members of “Team Taysen” paid their own costs, but a fund-raising page has been setup to let you donate toward an SMA cure. You can find the page at Team Taysen First Giving.
Third, you don’t have to break your bank or give some outlandish amount of money. Any donation is fantastic and little-by-little, we can reach our goal! Here are a few ideas to consider for finding a little bit to give:
- Don’t get your morning or afternoon coffee or soda for a few days. Take that $5-$15 and give it.
- Decide to not eat out at all for a week and give that $20–40 instead.
- Collect the change each night from your pockets or purse and put it in a jar for a week. Give that amount to find an SMA cure.
- Consider how thankful you are for your blessings & health and that of your family. Give an amount to show that thanks.
- Come up with your own ideas for putting aside a small amount to give. Don’t wait for tragedy to strike for you to care. Giving in turn returns with goodness to you.
You Can Help Find a Cure!
A cure won’t be found without funds and that’s where you can come in. You can be involved if you want or just simply give and spread the word. Help Taysen and thousands of others who suffer with this terrible disease AND perhaps help ensure that your loved ones don’t get it too.
Thank you and NEVER GIVE UP!