We live close to Prairie Elementary School, where Ella and Henry attend. Ava’s in junior high at another location. Henry has just finished fourth grade and will be “king of the hill” in the fifth grade next year. Ella has completed third grade and is excited to…
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’s sister, Ava, plays the violin and sings in the school choir. She practices her violin at home almost every day. Henry, their brother, plays the piano and practices as well. In fact, he has a piano in his bedroom and plays while we’re getting ready for bed.
Ella’s mom, Lindsay, came home from the Marianjoy Rehabilitation Hospital over the weekend after having her lower right leg amputated because of a foot infection that lasted four years. While Lindsay was gone, Ella had to rely solely on me for her needs. And…
Ella sits in her power chair at a table in the hospital’s surgical waiting room. She’s coloring a picture with the words, “The Best Is Yet to Come” on it, surrounded by flowers. She works with diligence and precision. Her artwork is for her mother, Lindsay,…
My daughter Ella went to the hospital last week to receive her ninth dose of Spinraza (nusinersen). Before her appointment, she had concerns about the procedure. For several months, she has watched as her mother, Lindsay, battles a bone infection due to surgery. The…
My wife, Lindsay, and I work as a team when it comes to taking care of Ella and the household. We have three children, ages 11, 10, and 8, as well as two young dogs and a bunny. Taking care of Ella requires physical strength. We…
Ella is growing up. She is starting to see the world through new eyes. She’s finding humor in light sarcasm, developing a taste for music, and exploring her artistic side. Her friends are becoming increasingly important in her life. Last weekend she asked if one…
Taking care of Ella is a full-time job. She needs help getting food and water, going to the bathroom, and moving around into various sitting positions. She needs help playing with toys, swinging on the swing, and going in and out of the house.
Ella has been in therapy since before the day of her diagnosis with SMA. We knew she was late meeting many milestones, so we went to Early Intervention and started physical therapy. For every step forward, she took two steps back. We were dumbfounded. It…
Play dates come and go for Ella, just as for any other 8-year-old. She usually has her friends come over to our house because of her wheelchair. The kids play on the first floor for a while, then they want to go upstairs to…
The weather is starting to turn here in Chicago. Rain falls slowly, covering the grass, streets, and sidewalks. Warmer winds are blowing leaves left over from last fall. Spring has arrived. Our accessible van had a rough winter. In the frigid weather,…
Ella has had several surgeries in the past seven years since her diagnosis of spinal muscular atrophy (SMA). Her first was for the placement of her G-tube. This device allows us to supplement Ella’s diet and administer her medications easily. Her second surgery was…
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