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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Ella’s excited to start school. She adores her school, her teachers and her classmates. Now that summer is coming to a close, Ella counts the days until she can begin going to school every day. Each day…
“I’m sorry you have SMA,” Lindsay said to Ella. “Me too,” I echoed. Ella’s head moved to the side a bit as she looked at us and said, “I know.”…
Bathing suits, sunscreen, towels, and water. The key ingredients for some summertime fun. Almost all kids love the water and Ella’s no different. We all know the feeling of floating, yet for Ella…
Children engage in all kinds of play throughout the day, from quiet play to rambunctious play. Ella is no different, although her terms of engagement can sometimes be different from your typically developing…
Children grow. They grow older. They lengthen. They gain weight. The same is true for kids with SMA. Because they are wheelchair-bound, their caregivers spend much of the day lifting them in and…
“Get off the pillow!” screamed Ava. “It’s my pillow. You get outta my room!” yelled Ella. “You wanted me in here…” argued Ava. “Well, now I don’t,…
The nature of SMA Type 2 makes everyday tasks difficult. Brushing teeth, getting dressed, and even drinking water can pose challenges that require others’ help. Accepting help is part of…
Around almost every corner of each wall on our first floor we have small corner protectors. This is to combat Ella clipping the corners as she cruises around the house. We purposely bought our…
Her lips quiver, but days before they sported a wide smile. She grabs for my hand in an attempt to gain comfort, but a day before she gave me high fives. The noises from her mouth are…
Just overhead, an ominous, black cloud lingers despite a gentle breeze. The sun shines brightly behind some errant white clouds and blue skies peek out between. Slow, rolling movements make us wait to see which weather will prevail.
The battery level on Ella’s power wheelchair Flashing lights, beeping sounds, and a host of power in her little grip. The Permobile C300 is Ella’s power wheelchair. A 304-pound purple machine that provides her with mobility.
Henry, Ava, Ella, Daddy, and Mommy. Ella is an almost 7-year-old who has been driving a 300+ lb power wheelchair since she was 18 months old. She has had her share of banging into corners, taking…
