Krista, John, Josh, and Anna Scurria at the Evening of Hope for Cure SMA.

John and Krista Scurria, of Baton Rouge, La., believe in a parent’s intuition. Krista first became worried about the development of her oldest child, Josh, while she was still pregnant with him. But doctors disregarded her concern, attributing it to first-time parent naiveté. However, she and John continued to worry after Josh was born, and that parent’s intuition was not wrong as they saw him struggle to meet developmental milestones. Today, John and Krista are parents to 20-year-old Josh and 17-year-old Anna Rose, both of whom were diagnosed with spinal muscular atrophy (SMA) before treatments were available.

During Josh’s six-month well visit, Krista and John insisted that something was wrong with their child, so the pediatrician referred them to a neurologist for additional tests. In February 2000, Josh was diagnosed with SMA. Krista recalls her and John sitting and crying for hours until she finally said, “It’s the year 2000. Anything can happen, so we have to have hope.”

Back then, John and Krista didn’t have a computer but were able to borrow one from a friend. It did not take long for them to find online chatrooms focused on SMA. They realized that sitting around and crying wasn’t going to help their son, so they decided to do more research and get involved in the SMA community.

Two weeks after Josh’s diagnosis, John and Krista discovered and got involved with Cure SMA, then still known as Families of SMA. “We knew that feeling sorry for ourselves wouldn’t help our child, or other kids with SMA for that matter. Fundraising, and ultimately finding a treatment and cure for SMA, was the only way out,” explained Krista. So, two years after Josh’s diagnosis, Krista and John started the Louisiana Chapter. Shortly after, in March 2002, Krista and John were expecting their second child, Anna, who was diagnosed with SMA right before Christmas that same year.

Today, Josh is a full-time student at Louisiana State University and works part-time at the Apple store. Baton Rouge is a small town, and many people tell Krista what a wonderful person Josh is. “I am so proud of how far he’s come,” said Krista. Josh is thinking about law school and considering being a sports agent.

Anna is a junior in high school and “her grades are amazing,” Krista gleefully noted. Anna enjoys the arts and music, including singing, concerts, and theatre. Anna is a typical teenager, whose goals include having a boyfriend, going to and succeeding in college, driving a car, and getting a job she loves.

The Scurria family are still active members of the SMA community. The first Evening of Hope Singer-Songwriter Night was held in 2016. Since then, the family has raised funds for Cure SMA by hosting a night full of live music, drinks, and auctions. Both Josh and Anna also began treatment for SMA in May 2017. “Our kids are thriving because of the advances made by Cure SMA. They are living a ‘normal’ life. What more could you want?” concluded Krista.