Spinal Muscular Atrophy Awareness Month

  • By: Joni and Friends
  • Aug. 13, 2018
  • 1 Comment

The month of August is Spinal Muscular Atrophy (SMA) Awareness Month. In honor of that, we sat down with Tracey, who works in our Response Department, and asked her a few questions about her experience with SMA. We were encouraged by her answers and we hope you will be, too!

Tracey, you are an absolute joy to work with. What’s your secret?

Being disabled can be hard, there are certainly some days I feel like I live in a world that isn’t made for me and thankfully many other days I sail through without a thought of my limitations. Irrespective of which kind of day I am having I want to share an abundance of joy with everyone I meet, and the ways I have found to do that are exactly as Romans 12:12 says, “Be joyful in hope, patient in affliction, faithful in prayer.” I make it my aim to be patient with my limitations and faithful in asking God for an extra measure of grace in the face of challenges.

What have been the most difficult seasons for you in relation to SMA?

Facing life transitions while living with a severe disability can feel quite overwhelming. Moving away to college meant my parents and I had to start planning much further in advance to accommodate my accessibility and care needs. When I applied for a new job I was acutely aware of how my physical limitations may impact my ability to accomplish my job duties. These difficult transitions taught me the importance of being an effective advocate for myself as I navigate life with a disability.

What kind of mentors have helped you live your life to the fullest?

Growing up the highlight of my year was to attend the Muscular Dystrophy Association’s summer camp. For one week a year, I got to be surrounded by kids who were just like me. Back at home, I was the only girl in my school who used a wheelchair, so seeing other kids in chairs was not something I experienced 51 weeks of the year. But at summer camp, much like Joni and Friends Family Retreat, activities were geared toward all abilities and I was able to form lifelong friendships with others who have my same disease. One fellow camper, in particular, was very influential in my life. She is 5 years older than me and I had the privilege of watching as she learned to drive a car, moved away to college, and got married. All of these typical achievements in life seemed so insurmountable until I watched her successfully accomplish them. The dreams I had were like seeds waiting to be planted, watching her mature and succeed in life was like water and sunshine allowing my own goals to sprout and fully bloom.

Can you share a bit about the new treatment you are starting?

When I was diagnosed with SMA in 1980 there wasn’t much known about the cause and there certainly was no treatment on the horizon. In the early 2000’s I was part of a drug study that was ultimately deemed unsuccessful, so I was cautiously optimistic about any new studies. But a few years ago, my neurologist, who was participating in a new study, encouraged me to keep my eyes and ears open. And on Christmas Eve 2016, the first-ever treatment for SMA was approved by the Federal Drug Administration… how’s that for the best Christmas gift ever! This new drug, called Spinraza, is indicated to stop the progression of SMA. Those three little words “stop the progression” have such a huge ripple effect in the lives of every single person diagnosed with this disease. When you live with a progressive disease and lose functionality little by little, you have to continually adapt and overcome new challenges. Knowing I could freeze my progression in its tracks gives me so much hope for the future.

Is there anything you want others to know about SMA?

Just like 2 Corinthians 12:9 says, God’s grace is sufficient and His power is made perfect in weakness. I certainly am very weak, but through God’s grace, He has blessed me with unique gifts to share with the body of Christ. So please never underestimate anyone with SMA. The disease may take away a person’s ability to walk, sit up, or even talk… but never the ability to shine a bright light for Jesus!

 
 

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Wonderful testimony!
  • Aug. 29, 2018
  • 11:18 a.m.
  • Jennifer Gonzalez