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).
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…
Cold winds are beginning to blow the leaves off of the trees. A circus of colors swirl in the air, never resting on the ground. Winter is on its way. Getting Ella ready to leave the house during the summer and spring…
Over the years, we’ve trained a few people on how to care for Ella. We have to show them how to stop and start her feeding pump, disconnect and connect the feeding tube to her G-tube button, lift her from her chair, take her…
Kids and adults alike love to ride bikes. Exercise, travel and autonomy sprout from the experience. For a person with SMA, the experience easily can elude them. Their legs aren’t strong enough to move the pedals, their balance isn’t sufficient to master the task…
The trip to downtown Chicago takes but an hour for us, as we make our biannual trip to Lurie Children’s Hospital for Ella’s clinic. This one was an eye-opening experience. Every six months, the neurology, pulmonary and therapist team members get together…
The middle child holds a special place in everybody’s heart — they’re the peacekeeper, the negotiator, the one most likely to feel overlooked. Henry fits the bill to a T. He is Ella’s older brother and Ava’s younger one, and he seeks acceptance from…
Ella’s a hard-working 7-year-old. She rises early in the morning for school. While at school, she does what all of the other kids do and more. She has therapies to go to (physical therapy and occupational therapy) throughout the week. They work her hard…
