Technology is a big part of our lives these days. It helps us with learning, shopping, and communicating, among other facets. Kids today rely on technology for many of their needs. But what about kids with spinal muscular atrophy (SMA)? How do they fare in this…
Five Servings of Strength
— Michael Casten
Michael is married and a father of three, one being a child with SMA Type II (born in June, 2011). He is an educator who has worked directly with children and their families since 1994. He loves his family, writing, working with his hands, and taking road trips. Michael holds a bachelor’s in psychology (1994) and a master’s in education (2001).
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Ella, 10, the youngest of our three children, is thriving. She has friends from school, in the neighborhood, and online. She sings in a community choir, and occasionally plays with her siblings. Due to Ella’s disease, spinal muscular atrophy type 2, which directly affects her respiratory…
Ella has always loved to sing. Because she can’t join physical activities or play an instrument, we decided to enroll her in the Young Naperville Singers (YNS) choir. Ella was overjoyed. She finally had something like her brother and sister — who study piano and…
My alarm went off at 7:09 a.m. I rolled out of bed and walked into Ella’s room. She lay sleeping peacefully. I went downstairs and met both dogs, who were ready to go out for the morning. I made a cup of coffee and sat outside with the…
Ella looks forward to her Spinraza (nusinersen) treatments for SMA. She knows that Spinraza helps her get stronger. And while she doesn’t like the smell of the anesthesia, she toughs it out anyway. This round of Spinraza is a bit different though. Since the onset…
Ella has not been out of the house for weeks. She spends much of her time doing schoolwork. Every morning, her teacher has a class meeting on Zoom. Ella tunes in to get the day’s lesson. When the meeting is over, she immediately gets…
Ella is a social person. She loves developing relationships with others and is always up for a family night. She builds delicate yet sturdy friendships with people and navigates these relationships well beyond her years. Having SMA presents challenges. For many years, Ella watched her siblings…
All three of our kids — Ava, Henry, and Ella — have been stuck inside the house for a month or so due to COVID-19 quarantine. They’ve been finishing school work, playing on their devices, and doing other small projects. Ella’s mom, Lindsay, and I…
Like everybody else, Ella has been kept in the house because of COVID-19. During the school week, she spends much of her morning working on classroom assignments. Each morning she has a Zoom meeting (virtual conferencing) with her whole fourth-grade class and the teacher.
Spring is peering its head around the corner of winter. Some warm days with slight winds blow the remaining leaves around in swirls. Small yellow flowers poke themselves up through the hardened ground. Buds are forming on tree branches and birds chirp a new song for the upcoming…
It was a sad time when our dear Potter had to be put to sleep because he had T-cell lymphoma. Our entire family went along for that, including Potter’s sister, Ginny. We knew our 3-year-old dog wouldn’t make it, so before he left us, we contacted a…
School books, folders, random scratch paper, art supplies, food, drinks. All of this lay aimlessly on our kitchen table. Until recently, my children — Ava, Henry, and Ella — spent much of their day at the table. There, they engaged in e-learning, arts and crafts, and eating. We…
Ella loves school. She thrives on social interactions and has a thirst for knowledge. Every day after school she gets a snack and pulls up to the breakfast room table to work on her homework. On weekends she plays school and pretends to be the teacher. Her grades…
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