Life has been a roller coaster since my youngest daughter, Ella, was diagnosed with spinal muscular atrophy type 2 at 14 months old.
Shortly after her diagnosis, Ella received a power wheelchair from our insurance company. It was 400 pounds, raised and lowered to the ground, and had all of the features, including a tilt feature. Ella was barely 20 pounds, yet she taught herself how to maneuver the massive machine. However, she also made plenty of holes in the walls as she learned to navigate our house.
We soon realized that the chair was too big for her and for our house. We went to a trade show and talked with a wheelchair company’s representative. He had a solution for us: a donated chair that was much smaller. We put together a plan and had the chair delivered to our house. This one didn’t have all the bells and whistles, but it was smaller and kinder to our walls!
Ella grew, and her needs grew along with her. In a short time, she outgrew the wheelchair and was ready for another one. Once again, she was given a large 350-pound chair with all of the features. This chair was a bit smaller than the first one. She loved her chair and it worked well in the house and at school. We were happy with the chair, and life went on.
A few years later, Ella needed a chair she could take to her friends’ houses when she had a play date. We bought a manual chair called a Zippie for her to use. The only problem was that Ella was not strong enough to manually move the chair. She had to be pushed around when she used it.
After doing some research, we found a company that modifies a manual wheelchair with a battery and special wheels to make it a power chair. The device is called an E-Fix. We raised some money and had her Zippie modified with the E-Fix. This chair can change from manual to power easily. It is much lighter and easier to drive. It doesn’t wreck the walls when she accidentally hits one. The chair is light enough to lift into the van so we don’t need a modified vehicle. We can also bring it to friends’ houses for play dates.
Ella loves her chair. She uses the “big” chair as a backup and the smaller chair is in the basement. We donated her first chair to another family that has a child with SMA. Ella now tools around the house and outside in her modified Zippie chair.
Sometimes simpler is better!
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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