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,…
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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…
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…
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 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…
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…
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…
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…
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…
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…
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…
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.
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…
