A new wheelchair-accessible home is perfect for my son with Pompe

This growing family is moving to a bigger, more accessible home

Keara Engle avatar

by Keara Engle |

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House hunting isn’t easy, especially when you’re searching for an affordable wheelchair-accessible home. But thankfully, we managed to find a beautiful one that fits our monthly budget for rent, and drumroll … it’s wheelchair accessible!

We’ve been planning to move for quite a while. My 6-year-old son, Cayden, isn’t getting any smaller, and due to infantile-onset Pompe disease, which severely affects the muscles in his legs, he uses a wheelchair to get around.

In the past, it wasn’t hard for me to carry Cayden around. But now, he’s over half my height (which isn’t saying much considering I’m only 5-feet, 1-inch tall). He’s also been steadily gaining weight over the last few years, thanks to his feeding tube. His most recent weight was around 45 pounds. Trying to move him around has been getting harder by myself, especially since I’m five months pregnant.

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The solution is to rely more on his wheelchair while at home. But it’s hard to do in our current apartment. There are two small steps to get into our front door, and the doorways inside are a tight squeeze. The apartment is also too small for our growing family.

But all of this will soon change because I managed to find a place that is accessible. The entrance has no steps, and the doorways inside are wide, making it easier to wheel the chair around. Cayden still uses a manual wheelchair, so the new arrangement will be much easier for me.

Another feature I love about the new house is that two of the bedrooms are connected by a door. I’ll feel better knowing that Cayden is in the next room and I can easily check on him throughout the night. Although he’s 6, I still check on him periodically at night because he uses a BiPAP machine while he sleeps, and he likes to be adjusted into new positions throughout the night.

This will be the third place we’ve lived in since Cayden was born, and although moving isn’t fun, I know it’ll be worth the effort. This will be the most wheelchair-accessible home we’ve lived in yet, which is why I fell in love with it. I’m not sure who’s more excited about it — Cayden or me. I can’t wait to turn it into a home for my children and me, and I’ll be forever grateful for the opportunity!

Note: Pompe Disease News 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 Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


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