31 Days of SMA: After Our Daughter’s Diagnosis, We Decided to Make Lemonade

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by BNS Staff |

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sma diagnosis | SMA News Today | Corey and John Weber stand outside holding their newborn, Kate

From left, Corey, Kate, and John Weber. (Photo courtesy of the Weber Family)

Day 26 of 31

This is John, Corey, and Kate Weber’s story:

When my husband John and I learned our 4-month-old daughter, Kate, had SMA type 1, some of our first thoughts were, “Why us?” “Why is our girl 1 in 10,000?” “How are we so unlucky to have had her in one of the few states that has yet to add SMA to newborn screening?”

We wanted to curl up into a ball in a dark corner — and don’t get me wrong, we actually did. We asked those questions and felt those overwhelming feelings. But whether we are optimists or just realized there wasn’t another choice, we decided to focus on all of the silver linings we could find. We chose to turn our lemons into lemonade.

In May, at the time of Kate’s SMA diagnosis and subsequent dosing of Zolgensma (onasemnogene abeparvovec-xioi), we concentrated on the many things we are thankful for, including:

1. The outpouring of love from amazing family, friends, and neighbors, some of whom we hadn’t connected with in years.

2. Wonderful work families who gave us the space and support we needed at the time to ensure Kate got the quickest and best care possible.

3. Our proximity to one of the top pediatric hospitals specializing in SMA treatment. We live in Alexandria, Virginia, and are just a 30-minute drive to Children’s National Hospital. Going through SMA diagnosis, treatment, and follow-up appointments would have been much harder away from the comfort of our home.

4. Science and innovation! The science that went into making Zolgensma is mind-blowing. We still don’t completely understand it but are thankful there are people who do.

5. Calling the U.S. home. We do not take for granted the fact that the U.S. has three FDA-approved therapies for SMA, because we know that is not the case in many other countries.

6. Kind humans like our doctor, who fought to get us the earliest possible date for the Zolgensma dosing; our nurse, who was supposed to have Kate’s dose day off but volunteered to come in because she knew how important an earlier dose date is in terms of outcomes; and neighbors we had not yet met but who had heard about Kate and dropped off meals in those blurry days after her SMA diagnosis.

There are many more silver linings, and we know we’ll have more lemons to turn into lemonade. But we continue to feel very grateful and hopeful.

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.