SMA affects the entire family. Sometimes it’s obvious, and sometimes it’s not. Either way, each involved individual must navigate the disease, alongside its implications, and figure out a way to cope. Child or adult, male or female, parent or sibling; the…
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 sits in her wheelchair crying. Her mom is right there with her holding her hand. I walk into the room and stand looking at the two of them. I figure out they are in a deep conversation as Lindsay waves her hand at me.
It doesn’t happen often, but it does happen. Ella had the pleasure of being invited to a friend’s house to play after school. The trip to her friend’s house was a mere one-minute drive, and packed in the car along with…
Each morning, either my wife or I help Ella get dressed. During the school week, my wife has the responsibility, and on weekends, it falls on me. Every night, I bathe Ella and get her ready for bed. We’ve developed quite a routine for…
Surrounded by kids, friends from school, camera pointing at them, masks on, and backdrop chosen. A birthday party is in full force at a venue called Selfie Party Fun in Naperville, Illinois. A full array of activities was going on, most of which Ella can partake in,…
“Whoa, Daddy, Daddy!” Ella exclaims as I sit her on her bath chair. “Whoa, whoa, Daddy!” Ella says as I sit her on the toilet. “I’m gonna fall!” Ella offers as she sits on the couch. Now that…
Ava and Henry slept over at a friend’s house across the street. They had Grandma and Grandpa pick them up from school. They thought about Ella and asked how she is doing. They knew Ella would come home from the hospital with a boatload…
The healing process is long and arduous. Positioning is critical, medications are imperative, and positive energy is vital. Spine surgery requires bravery, determination, and stamina. Ella returned home from spine surgery six days after she was admitted to Lurie Children’s…
One of the consequences of having SMA is scoliosis. The increasing curvature of the spine contorts the body and compromises lung function. A thoracic-sacral-lumbar orthosis (TSLO) helps with supporting the body, but it doesn’t do anything to correct the curvature of the spine.
Spreading awareness about SMA has been one of our goals since we first were given Ella’s diagnosis in 2011. We immediately started a blog for our friends and family, so that important updates could be disseminated in one place rather than having to repeat…
Ella again had a Spinraza (nusinersen) injection last week. As per the regular routine, she had a physical therapy (PT) assessment using the Hammersmith Motor Function Test. The last time she did this test, she improved her score by four points, which…
Fall slips away softly as the brilliant colors of fallen leaves let go of their color and begin to dry up, preparing for decomposition. The time comes when all leaves must be lifted from the grass and placed in the leaf piles we so…
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