Ava started junior high school this past fall. It’s the first time she’s attended a different school from her brother, Henry, and her sister with SMA, Ella. She made the transition smoothly, waking up before everybody else to catch the 7:15 a.m. bus, navigating the halls of her…
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 was out of her therapies for over a month due to her broken ankle. She started back this week with both aquatic therapy and physical therapy. She has new therapists because her longtime therapist took a leave of absence. I sat with…
Ella’s temperature rose overnight last week. She woke up with a sore throat and body aches, so she stayed home from school, which put a strain on the household because of her extra care needs. Lindsay, my wife, works as a children ministry…
Ella is curious. She seeks answers to the perplexing world of an 8-year-old, always wondering about the things she sees and experiences. She has a keen sense of people and their emotions. When fighting with her brother and sister, she is the one who often offers…
Ella is 8. Caring for her is a team effort: Dressing, bathing, toileting, and transferring are some of the tasks Ella needs help with. Alongside this physical assistance, Ella, like every child, needs support with her mental and emotional growth, confidence-building, schoolwork, and character development.
Obtaining the right equipment for a child with a disability can be expensive. Yes, some insurance companies cover a lot of base medical needs, but many necessary modifications are not covered by those companies. Thankfully, the University of Illinois at Chicago has a program called the…
Ella takes great joy in slime. It’s the new craze these days. We sit at the kitchen table and pour glue into a bowl. We add other ingredients and before you know it we’ve made a squishy slimeball. She watches YouTube videos to get new ideas…
Kids with SMA have brittle bones, and Ella has had her share of breaking them. Just the other day she was sitting in her power wheelchair next to the coffee table. She was playing a game on her iPad. Her power wheelchair was “on,” and her…
Henry’s been in soccer for quite some time now, and he’s getting really good at it. He loves to play, attends practices willingly, and looks forward to games each week. Ava takes violin during school and after school. She practices almost every day in the living…
Siblings. Ella has two of them, both older: Ava (11) and Henry (9). They face all of the typical adventures that kids their age face such as school, friends, and screens. But one thing they have to work with that eludes their peers is having a…
A loud horn. Headlights and backlights. Hazard lights. Turn signals. Tilt features. Ella’s new wheelchair has arrived! We’ve been waiting for her new chair for one to two months now — and it’s finally here. It goes faster than her old chair…
Ella watches Henry go out with his friends. They start at one house and easily move to another while riding bikes, walking, or riding their scooters. Ella gets jealous. She wants to be able to go to a friend’s house and play, too.
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