A couple of weeks ago, Lily and Emmy were able to volunteer for a research project. This research, through Rush University Medical Center, is to help fight a rare neurological disease called Niemann-Pick Type C. Lily and Emmy were part of a control group of normal, healthy children. The researchers attached sensors to several places on the girls’ bodies to measure their gait and movements. By measuring how a typical child moves, they hope to see how an experimental drug for Nieman-Pick disease is working with children who have this rare disease. The researcher that worked with us told me that there is a lot of information about how a typical adult moves, but there is not as much information about the movements of children.
By measuring how much typical children sway as they walk, how fast they walk, how much they move when standing still and other information, will help researchers to know what is normal movement for children of different ages. This information will be compared to the movements of children with Niemann-Pick C disease.
Specifically, we hope this research will help Hayley, a young girl who lives in our area. She was diagnosed with Niemann-Pick when she was 11. We don’t know Hayley personally, but we learned more about her condition in an article featuring her in the Chicago Tribune.
Hayley has a rare genetic disorder called Niemann-Pick Disease Type C, often dubbed childhood Alzheimer’s because its symptoms are similar to those of adult dementia, though it’s not the same disease. Memory, speech and mobility fade. It gets harder to eat and drink unaided. There is no treatment approved by the Food and Drug Administration, and young children with the disorder typically don’t live past their teens. Chicago Tribune, February 8, 2016Read more here.
During the weekend of research (which was hosted by our church), information was collected from 40 children! It was such an easy thing for these kids to give up some of their time to help others. Not only that, but I think the kids had fun participating in scientific research. It was a great experience, and I hope it will be beneficial to Hayley and other children with Niemann-Pick Type C.
When I was a kid, rollerblading didn’t even exist. There was roller skating, and ice skating. If it hadn’t been for birthday parties at the roller rink in Paxton, Illinois, maybe I never would have learned to roller skate. My first couples skate was holding hands with a boy named Quentin when we were literally 12 years old. Then we moved to the ‘burbs, and I went roller skating with my youth group. We skated to Michael Jackson’s “Thriller” and Axel F. from Beverly Hills Cop back in the 80’s.
Then in the 1990s, the rollerblading craze hit, and I jumped right in. I bought my own pair of rollerblades. Skating on rollerblades was deceptively harder than roller skating, this balancing on a row of wheels, but I was soon rollerblading along the blacktop paths of DeKalb, Illinois. As long as there weren’t any hills, I was okay.
As with most athletic activities, such as biking and skiing, rollerblading went by the wayside when I became pregnant for the first time. It wasn’t until Lily was in Kindergarten when the rollerblades came out of retirement. Every year, her school has a rollerskating party, and we love to go when we can. Sometimes I see some of my students skating with their older siblings, and they get a kick out of seeing their preschool teacher on skates!
This past year, the girls enjoyed the rollerskating party so much that I took them to the roller rink for open skate on President’s Day. Lily has her own pair of roller blades, and I rented a pair for Emmy. The rink was less crowded than it is when the school goes, and we had a lot of fun skating together. I loved seeing the moms who were encouraging their kids to skate. Some watched from the sidelines, some were learning to skate themselves, and some were obviously pros. I’m definitely wobblier than I used to be, but I feel pretty good getting out there and skating even though I’m definitely a middle-aged mom. Lily and Emmy loved skating to Taylor Swift’s “Shake It Off” and of course, “Uptown Funk.”
Since our weather seems to be very fickle this year, I think we’ll have to go skating again soon!