The following was written by Janine Vasquez, mom and wife to a variant CAPS (cryopyrin associated periodic syndromes) crew.
Most parents look forward to the day their child no longer has to use a stroller or need a diaper bag full of supplies. For many parents of children with autoinflammatory diseases, this milestone leaves us having to ask what will happen the next time our child has joint pain, or how will we keep their injectable medicines cool on a trip down to visit family?
We have three children, and all three unfortunately inherited the same disease. We were thrilled to finally get an answer after 10+ years of searching, but that answer has led us to more questions. As our children’s fevers became less severe, other symptoms started to show up. They once went from never getting sick to catching multiple colds, and unfortunately these viruses would trigger their disease flares.
With our youngest on the verge of turning 6, and our oldest almost 13, we had felt our days of using an umbrella stroller were over. The problem was in January, our children caught a virus, and while they were able to fight if off easily, their disease flares became more of a challenge. When you have two children having daily low grade fevers for 6+ weeks, it becomes hard to live your life.
We started out slowly with the idea of a wheelchair. One day, when my youngest was crying about his knees, we decided to try out a store wheelchair. It was a way to try one out with the commitment. The difference was amazing; the trip so much less stressful! We thought to ourselves, “Why had we never done this before?” The reason was clear though, because you had to admit your kids might actually need it, which is never easy.
We eventually eased into using a store wheelchair when needed, but we found that most places only had the electric ones (not good for kids), or the push wheelchair was missing pieces or just dirty.
After another mom mentioned the idea of needing a lightweight folding wheelchair to help with her child’s stamina, I finally made the leap to looking for one on Amazon. It still took me a week of tossing and turning, but finally one day I hit click and then we were the owners of a Drive transport chair!
Let me tell you, it’s the best decision we have ever made. This chair has allowed us more freedom, and less stress. We went with a transport chair over a conventional wheelchair as they are lighter, cheaper, and fold easily. Ours is a 19-inch, which is wider than usual, but it helps fit two kids at a time.
Our big test came in June, when we ventured to Disneyland for our anniversary. The chair allowed us to have a great time, and for the kids to save their energy to have fun. Our daughter became overheated, so we were able to have her sit and cool off with her cooling vest while we continued to walk to the next area of the park. The chair fits through doorways and the lines at Disney. It also is beyond easy to steer, even with two kids sitting in it. The chair also fits a large diaper bag on the back to store your medications, thermometer, ice packs, or other items you may need on hand.
One unexpected positive result to using a wheelchair/transport chair is that is makes your child’s illness go from invisible to visible. One of the biggest issues with these diseases is that our children look like everyone else and often people only see your child on a good day. People don’t realize your child will have a 105º fever the next day from the activities of today, or they might have a headache due to intracranial pressure, and you can’t see joint pain. We found that with the wheelchair people were more kind and understanding.
We are very happy that we finally broke down and bought the wheelchair. It has given us more freedom than we expected without being cumbersome and we’d highly recommend the Drive chair if you are looking for something lightweight and foldable.