Look Who it Was Random video

Help Caleb MOVE into the Future

531 views · Published 19 November 2016 · 8:34 · Indexed 8 November 2026

Channel: Watersafe SwimSchool · 2016 · Sports

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Caleb is 2 and a half years old. He is our third child. Although he did come a month early, Caleb had a beautiful, easy birth attended by a midwife, it was an all natural birth with no complications. He was healthy and given a clean bill of health throughout his infancy. Caleb started swim lessons when he was just six weeks old. We had an incredible time in the Parent Tot classes, but then we noticed he wasn’t progressing at the same pace as the other kids his age. Although he had already started to learn how to crawl and roll over, as the months passed he was beginning to do it less and less, and was not bearing weight on his legs when prompted to stand. It was around 9 months, he stopped army crawling, and began rolling over less.

We began seeking every expert we could to find out what was happening to Caleb; first visiting his pediatrician, an orthopedist, two different neurologist, another pediatrician (for a second opinion), doing Internet research, asking other parents online who experienced delayed walking, etc. Initially, our pediatrician said, “Nothing is wrong," and that "It can take up to 18 months for a child to walk”.  On another appointment the orthopedist added,"You shouldn't compare him to your other children, let him develop at his own pace."  It wasn't until December 2015 we were finally able to get a DNA Test (which of course, was not covered by our insurance) to test for less common genetic conditions. That's when our suspicions were confirmed. Caleb was diagnosed with SMA Type 2 (Spinal Muscular Atrophy). This disease is progressive, effect both voluntary and involuntary muscles, it ends many children's lives before adulthood, and eventually landing them all in manual or motorized wheelchairs; it is akin to muscular dystrophy. There is no cure. The only treatments available are physical therapy, occupational therapy, and the use of wheel chairs.

Caleb has always been and continues to be smart as a whip - no cognitive issues, only motor issues and muscular development. We started with Aquatic Therapy after his diagnosis but we don't want him to be limited, so we opted to go forward with full swim classes as the therapeutic aquatic therapy seemed to only focus on maintenance of his current activity level without the consideration that maybe he can do more. By far the best therapy has been his swim lessons with Miss Ginny. He loves swimming. He is always saying “I want swim class” when we're at home. We get tons of comments at SMA events we've attended, about how he's got great head control and the general level of strength he has for his age considering he is a child with type 2, but we have to keep up the hard work.

What we are raising funds for is to buy Caleb a wheel chair that is specially designed to be light weight enough for small children so they are able to move the chair themselves. We've asked our insurance company to help us cover the cost of chair as a 'Medical Necessity', but has been the case this whole time, they don't see it that way.

Panthera Micro 2
Lightest weight chair made
10-15 lbs vs. 5 lbs
With a lighter chair, he is able to “keep up” with the other kids.

With this chair he will have the opportunity to operate normally with the other children. And a big part of that is “keeping up with them”. What breaks my heart is taking him to play areas or birthday parties. I put him in a spot, and the kids will play for awhile but then they’ll move on.
I don’t want to force his 5 year old sister to stay with him. He’s still there mentally. He’s a happy fun loving 2 year old boy, and there are cognitive needs to be developed with playing with other kids.
There’s a lot of costs you don’t consider when you have a child that has a condition. There are lot of things that are covered. A lot of things that arise.

About Caleb's Condition:
Spinal muscular atrophy type 2 (SMA II) is an inherited condition that affects the muscles. It is characterized primarily by progressive muscle weakness that develops in children between ages 6 and 12 months. Affected children can sit without support; however, they cannot stand or walk unaided.

The treatment of spinal muscular atrophy type 2 (SMA II) is based on the symptoms present. Physical Therapy, Occupational Therapy and assistive devices (walkers, wheelchairs, etc) are generally recommended to help encourage maximum mobility and independence.

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