Exploring Different Mobility Devices for My Son, Who Has Pompe Disease

Keara Engle avatar

by Keara Engle |

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A few weeks ago, during my 4-year-old son Cayden’s physical therapy session with his home-based therapist, we had a conversation about mobility devices. Cayden has infantile-onset Pompe disease, which has caused him to have very low muscle tone. He is unable to walk or bear any weight on his legs.

Currently, we use a toddler-sized stroller for Cayden when we go out. While this has worked for the past few years, he will soon outgrow it. His physical therapist suggested we look into getting him an adaptive stroller.

These kinds of strollers are made for children with special needs. They have features such as footplates and different reclining options so that the child can be comfortably positioned. When compared with wheelchairs, they are usually lighter and more portable. The adaptive strollers can be folded up to fit in the car or stored somewhere in the home without taking up much space.

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I am anxious to get Cayden an adaptive stroller because I think it will make him feel more like a big kid and less like a baby. When other children see Cayden in his current stroller, they treat him like he’s much younger. But I can’t really blame them, as they’re just kids.

Typically, babies are seen in strollers, while toddlers and young children are up walking around. Thankfully, the adaptive strollers don’t really look much like strollers at all! I’m hopeful that this will help other children recognize that Cayden isn’t a baby anymore.

Another option we discussed was an actual wheelchair. The only problem is that our current apartment isn’t very accessible, and we also don’t have a wheelchair-accessible vehicle at this time.

I would love to be able to get a wheelchair-accessible van, but they are very expensive. There’s no way I’d be able to afford one currently. I have contacted multiple organizations looking for answers as to how we can get a wheelchair-accessible van without the funds for one, but nobody has answers. Sadly, this is a common issue for people with disabilities.

To combat these problems, Cayden’s physical therapist said that we should be able to get him a wheelchair that he can keep at school once he starts kindergarten next year. We could use the stroller to transport him to and from school.

This seems like a good idea, though I worry about what might happen if Cayden prefers the wheelchair over the stroller. I’m sure we could find a way to bring it back and forth between home and school, but it might take some brainstorming.

When the time comes, I want to reach out to other families to see what mobility devices their children use. I’m sure our Pompe family will have some suggestions. Luckily, we have some time to figure it all out. I’m just thankful that we have options.

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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