Taking stock of the unexpected blessings SMA brings

Our granddaughter, Clara, turns 10 this month. She loves choosing themes for her birthday parties, and “PopPop,” as she calls my husband, Randy, challenges himself to design and bake elaborate cakes to match.

This year’s theme is based on the Broadway musical and film “Wicked.” From the days of Disney’s “Fancy Nancy,” our sweet girly girl has favored pink, princesses, sparkles, and tiaras, so it’s no surprise that glittery Glinda the Good is her favorite character. Clara’s diagnosis of Beckwith-Wiedemann syndrome before her first birthday could’ve prompted her to find some common ground with the character Elphaba, who was shunned because she was different.

I haven’t seen “Wicked,” but I recognize a few of its songs. I looked online for cake decorations, finding no shortage of options. Party favors I knew Clara and her friends would love were equally abundant. I don’t order them, though, as the perfect resource was actually waiting in the wings.

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Locating other SMA families

In May 1997, Randy and I welcomed our third child. Although baby Jeffrey wasn’t planned, he was loved immensely. Matthew and Katie, his older siblings, adored him.

Life sailed along until July 7, when one of our dogs was struck by a car. As we waited for an update from the vet’s office, I discussed God, death, and heaven with Matthew, who was 10, and Katie, who was 7. By the time we learned that Duffy hadn’t made it, they seemed to handle their first experience with death remarkably well.

One week later, Jeffrey was diagnosed with the deadliest form of spinal muscular atrophy (SMA). In a stupor, I mustered optimism as I relayed our new assignment to Matthew and Katie. Still, the previous week’s conversation resurfaced that night. Matthew had figured out the likely scenario and asked specific questions that confirmed his fears. Katie focused elsewhere; she loved her baby brother and that was all that mattered.

Meanwhile, I was determined to prove the “no hope” medical folks wrong. I ransacked our newly acquired internet in a frantic search for information about SMA. I also tracked down fellow SMA families on message boards. Communicating with others in the same situation was a godsend. The list of families affected by this rare genetic killer was lengthy.

Despite our fervent efforts, Jeffrey’s ticket to heaven arrived before he turned 6 months old. My need to connect with fellow SMA families intensified. I felt compelled to keep in touch with those I’d met online, along with some I’d met in person, and welcome the newcomers to SMA as others had welcomed us.

I occasionally stumbled upon families who had experienced SMA more than once. The Vondraks were one such family. In January 2010, I sent Kari, the mama, a message after learning that she and her husband, Jesse, had entered their third round of SMA with their daughter, Bentley.

I had only our own brief experience with SMA to go on, and imagined life if Matthew and Katie also had SMA. It was unpleasant to fathom, and I felt guilty that our other two children were unaffected. I wrote Kari: “‘I’m sorry’ doesn’t seem adequate, but I am sorry.”

Oh, how life has a way of circling back around.

The Vondrak family is one of many blessed connections columnist Helen Baldwin has made because of SMA. In back, Kari and Jesse, and in front, from left, Jaycie, Bentley, and Kennedi. (Courtesy of Kari Reis Vondrak)

A ‘Wicked’ connection

Kari and Jesse have been scrambling on behalf of their three beautiful, industrious daughters for years. The scrambling is by no means over, and in some ways, it is likely more difficult now than in the earlier years. But they are witnessing the results of their tenacity.

Their oldest daughter, Kennedi, is 21 and lives with a roommate in an apartment 30 minutes from home. Support personnel helps out. She is searching for a job in vocational rehabilitation.

Bentley Vondrak made a “Wicked”-themed keychain for Helen’s granddaughter, Clara, who turns 10 this month. (Courtesy of Artsy Wonder)

Jaycie turns 19 this month. She’s a freshman at Buena Vista University in Iowa, about an hour from home, and lives on campus. Jaycie’s double major in English and digital media is only part of her college life. She is also active in the student senate and activities board.

Bentley, 16, loves to “bring happiness to people.” She does that through Artsy Wonder, a business she created before she turned 15. While making keychains, bracelets, earrings, and more keeps this entrepreneur’s fingers flying, Bentley’s figurative wheels turn constantly as she ponders how to expand her product offerings.

In my “Wicked” party search, I remembered seeing Artsy Wonder’s Facebook page. I contacted Bentley to see if she’d be interested in creating some themed bracelets and keychains for Clara and her friends. She wasted no time coming up with ideas, clarifying when necessary, and putting the pieces together. Bentley’s enthusiasm and eagerness to please brought much happiness to this customer. The squeals will commence when Clara sees what Bentley has created for her!

I took the time to read the inspirational note attached to my tea bag the other day: “Give thanks for unknown blessings that are already on the way.” A few weeks ago, Bentley qualified as an unknown blessing. Thanks to a “Wicked” SMA connection, however, she’s no longer unknown to me, and I’m thankful for that!

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.