31 Days of SMA: Being a Front-row Mom Is My Greatest Joy

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by BNS Staff |

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families of spinal muscular atrophy | SMA News Today | Kristen and her son Jack pose with a life-size animated figure in a costume. Jack's chair has a yellow balloon tied to it

Kristen and her son Jack. (Photo courtesy of Kristen Resendez)

Day 11 of 31

This is Kristen Resendez’s story:

As a mom, my favorite time of the year is the Cure SMA Annual Conference. It’s the only time of the year when I know my son can be 100% comfortable in his own skin. I’m Kristen and my son is Jack. He is 7 years old, and we live in South Texas.

Jack was born with SMA type 1 and was treated in a clinical trial at 4 months old. By that time, he was already utilizing all the medical equipment available, including a feeding tube. His first three years involved many hospital stays. It was tough, but I never stopped looking for the light. It took about four years to see the treatment do its magic in Jack’s body. Patience is definitely key in SMA life!

When Jack was 2, he developed strong head control. When he was 3, he sat up independently. In his fourth year, he said words and short phrases. At 5, he desired the ability to eat and developed the strength to accomplish it. This past year, Jack has been an amazing singer, master manipulator, power chair driver, and eater.

My passion is sharing his story with new SMA families, state government officials, friends, and whoever will listen. Stories lead to change. Members of the SMA community shared their stories to fight to get SMA on each state’s newborn screenings list. I did it in Texas, alongside another amazing mom.

At the SMA Conference this year, the president walked up to me and said that everything I put on social media helps many families and is important. It’s also important to me to do more than share our story. I want to encourage parents to pull themselves out of grief a little faster so they can eventually see what I see: a happy and unique life. Jack has had so many opportunities to live a life unlimited and louder than most people. He’s traveled, ridden scary roller coasters, made amazing friends, and had so many experiences.

Being a mom to Jack is my greatest joy. I know that one day he will either be the curator at a National Video Game Museum or winning a Grammy for his hit on a movie soundtrack. Whatever it is, I’ll be his front-row mom.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.