Last weekend was Lily’s 12th birthday. Isn’t she growing up fast?
On Saturday, her actual birthday day, she wanted to spend the day with her friends. So she planned a small party to have with just a few of her friends.
Our first stop was the roller rink. We skated for a couple of hours, and of course had a snack break. One of her friends left after roller skating because she had violin lessons.
The second stop was to a restaurant. Lily wanted to go to the Outback Steakhouse, and so we indulged her. Fortunately, everyone ordered something reasonably priced on the menu!
The third stop was our house, for dessert. Lily loves pie, so we had pumpkin pie, cherry pie and apple pie instead of birthday cake.
On Sunday, we had her family birthday party, which was also very small. Lily decided she wanted us to order Lou Malnati’s pizza for dinner, along with their signature salad. I was fine with her choice; no cooking meant less work for me! We had plenty of pie left over from the day before, so we had more pie for dessert!
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.