A Chance to Watch Him Grow

On January 20, 2022, Jennifer Swittens welcomed her first and only son, Zane, into the world.

The pregnancy had been smooth and the delivery uneventful. Within two days, she and her husband brought him home to start their life as a family of three.

Six days later, the phone rang.

It was the county. Something had shown up on Zane’s newborn screening: spinal muscular atrophy, or SMA, a rare genetic disease that affects movement. Jennifer was told Zane had Type 1 SMA, and that children with his diagnosis usually do not live past age two.

“Even though I’m in the medical field, I had no clue what that was,” Jennifer recalls. “When I Googled it, it scared me and my husband. I will always tell people, please don’t Google SMA. Whatever Google spits out is just devastating.”

The next day, Jennifer and her husband sat across from a neurologist in Dallas who explained Zane had Type 1 SMA. She told them about a newly FDA-approved gene therapy called Zolgensma, priced at $2.1 million for a one-hour infusion. At the time, it was the most expensive drug on the market.

“As soon as I heard that, I was like, I don’t even know if insurance is going to cover this. How are we going to afford to provide this treatment?” Jennifer says. “I’ve been working with Abbott for 13 years and we barely needed to use anything, thankfully. So I had no idea what our insurance was capable of.”

What followed was a brutal stretch of waiting. A Texas winter storm hit, and FedEx lost Zane’s first blood sample, costing the family a critical week. Jennifer had been told it was important to get the drug as quickly as possible for the best possible outcome. Around day 20, Zane’s legs stopped moving.

Then Jennifer called Abbott’s care coordinators.

“I was able to get in touch with a nurse and a care coordinator who helped me through the process,” she says. They walked her through everything, from filling the prescription to the perks of her insurance she had never known existed. They also stayed in close contact with Zane’s neurologist to help build the case for insurance approval.

At 32 days old, Zane finally received his gene therapy.

The neurologist had warned Jennifer that even with treatment, Zane would likely be wheelchair bound. For much of his first year, he barely moved. Then at 13 months, he lifted his head and rolled over for the first time.

“I was in disbelief. I couldn’t believe it,” Jennifer says. “Everybody in the world was excited. He was also excited because he didn’t understand why everybody around him was so happy about it.”

At two and a half, Zane took his first independent steps.

Today, Zane is four and a half. He talks constantly, picks up songs after hearing them once, takes piano lessons, and reads people with an emotional intelligence beyond his years. He knows what SMA is and knows where his limits are, but he keeps pushing them. His latest milestone is stepping up onto small ledges.

“He’s a miracle,” Jennifer says. “I don’t think without that drug we would have seen this.”

The support extended well beyond medical coverage. Abbott’s parental leave gave Jennifer the time she needed in those earliest days.

“My team at Abbott was amazing. They understood the story, they knew what was going on, and they were so flexible with my time,” Jennifer says. “Getting into work helped my mental health. You need that, so you’re not drowning in this unknown fear that you’re constantly in.”

Jennifer eventually relocated to Austin to be closer to Zane’s care and now serves as an engineering manager in the Global Engineering Group within Abbott’s Diabetes Care division.

Asked what Abbott’s benefits have meant to her family, Jennifer does not hesitate.

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