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20 Secrets People Affected by Spinal Muscular Atrophy Want Others to Know

Spinal muscular atrophy (SMA) is a disease caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein critical to the function of the nerves that control our muscles. Without it, these nerve cells cannot properly function and eventually die.

There are four types of SMA that range in severity, but all of them cause difficulties with walking, performing the activities of daily life, eating and even breathing. In its most severe form, SMA is the number one genetic cause of death for infants.

There is currently no treatment for SMA, but a number of drugs are being tested in clinical trials, and one of these will soon be presented to the FDA for approval.

August is SMA Awareness Month, so The Mighty collaborated with Cure SMA, an organization dedicated to the treatment and cure of SMA that has led and invested in research, making many of today’s breakthroughs possible. We asked our communities: “What’s one secret you want others to know about having or caring for someone with SMA?”

This is what they said:

1.You do not need to be afraid to be around us. We are still the same family we were before the diagnosis, only more fragile. Take precautions; don’t disappear. Ask us questions about our daughter. It does not hurt our feelings. Questions help spread awareness.” — Majerie S.

Daughter in mermaid suit with SMA
Majerie’s daughter
2.“These children are brilliant and can communicate in fascinating ways. Just because my son can’t move, doesn’t mean he can’t get his point across! He is 2 and tells me what he wants — down to what socks he wants to wear. Learn the way SMA children communicate and you will be blown away by how they can hold a conversation!” — Autumn J.
Son with SMA wearing glasses
Autumn’s son

3.It’s not the end of the world. I am 28 with SMA type 3 and have been quite successful in life so far as a teacher. Don’t let any disability or label define who you are. There is always another way.” — Megan E.

4.I would want others to know that caring for someone with SMA is not a burden. It’s not an awful and sad life. We live our life feeling blessed and grateful for each day. My daughter has truly been the biggest blessing in the world.” — Shellie L.

Shellie with her daughter who has SMA
Shellie and her daughter

5. “It’s the hardest and most rewarding job at the same time. They are extremely smart and bright. This is my daughter. If anyone can make you smile it’s her.” — Kelsy H.

Kelsy's daughter with SMA in a pink wheelchair
Kelsy’s daughter

6. “Living with SMA has taught our little family to learn to love a different kind of ‘normal.’ Yes, our daughters (both with type 2) cannot walk or move around on their own, but they are vibrant and full of life! They teach us every day to enjoy the moment and never limit the possibilities.” — Robin H.

Robin with his two children who have SMA
Robin and his children

7. “Don’t limit your expectations of what is possible for your child. I used to be surprised when my son or daughter would do something I never expected they’d be able to do. Now I watch and wait to see what they’ll accomplish next, knowing there is no limit to their potential.” — Danielle S.

8.My wish would be that the new drug that’s supposed to help cure SMA be here sooner then later.” – Melissa D.

Melissa with her son who has SMA on his birthday
Melissa and her son

9. “Being a caregiver isn’t giving up your time to help a child grow, but taking time to grow alongside the child.” — Chelsea K.

10.This disease does not define my husband. He is an individual who has spinal muscular atrophy. He is strong, loving, caring, and a wonderful father. SMA is a part of him but it does not define him.” — Adolfo P.

11.Take time to get to know my son and he’ll steal your heart just like he did mine from that first moment I saw him.” — Chris O.

Chris' son with SMA smiling in his wheelchair
Chris’ son
12.Caregiver fatigue is real. Self-care isn’t selfish. Keeping active and keeping social is so important in caring for my hubby of 28 years who has SMA type 3.” — Alicia L.

13. ”SMA takes away what dreams I ‘thought’ I had for my son, allowing me to see the dreams that my son has and will achieve.” — Bridget C.

14.It’s not always visible. Don’t judge. Just because I can’t do something doesn’t mean I don’t want to do it. Don’t think I’m not working as hard as I possibly can to keep the strength that I still have. I won’t give up on myself and no one else should give up on me either!” — Courtney F.

15. “I would want others to know that they do not know the meaning of true happiness until they have met someone with SMA. My son faces many physical limitations, yet he is always happy and smiling, and making others happy as well. It is impossible to be sad around him.” — Renee H.

Son with SMA smiling in chair
Renee’s son

16. “Don’t worry about breaking our kids. They are pretty tough. Also, parents and caregivers need to take the occasional break!” — Kelsey L.

17. “I have developed an amazing, special bond with my daughter. Even though she is going to be 16 years old, I still can carry her, hold her tight, tickle her and love her.” — Ruthie P.

Ruthie's daughter, on the photo it is written "I love you"
Ruthie’s daughter
18. “My beautiful, loving, caring, daughter is 45 years old. She is and will always be the light of my life. She has good days as well as bad, but she just never complains.” — Margaret A.

19. “I am a 19-year-old with SMA. I have moved out of home and am currently attending college at RMIT in Melbourne, Australia. It’s definitely not a death sentence.” — Harrison K.

20. “Even with SMA being a terminal diagnosis, it has taught us more about life then death. It has taught us how to love deeper, forgive quicker and be thankful for each day we are given.” — Brittney M.

Brittney with her family
Brittney’s family.

Are you affected by spinal muscular atrophy (SMA)? What’s one secret you wish others knew? Let us know in the comments below.