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Remodeling the Bathroom for Ella

Ella is growing up. She just turned 9 on June 10 and will be entering the fourth grade this fall. Her mind is as sharp as a tack. She’s starting to understand sarcasm and the ways it can be used. She is expanding her friendships to include a variety of…

SMA and Progression: Do What You Love While You Can

SMA comes with a lot of challenges. The progression of the disease is the worst — at least, in my experience. About a year to 18 months ago, I finally had to accept the fact that I just couldn’t drive my electric chair anymore. Honestly, I probably shouldn’t have…

My Bobblehead Days Are Behind Me

One of the ways that spinal muscular atrophy (SMA) has affected me physically is my posture. I’ve always had difficulty sitting up straight, and to this day I have lateral supports attached to both sides of my wheelchair to help with this. I…

Want to Pray for a Disabled Person? Ask First

If you live with a visible disability or illness, then there’s a good chance you’ve experienced a stranger coming up to you and asking to pray for you. As someone who has lived for 21 years with spinal muscular atrophy (SMA) and uses a motorized wheelchair, I have had…

Ella Thrives as She Celebrates Her 9th Birthday

Our house is filled with music and song. Ella turned 9 on Monday. In light of her joining the Young Naperville Singers, we decided to get her a karaoke machine. She was delighted at the prospect of hearing her voice through the speakers. We downloaded an app to go…