Author: Ginny Marie

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The Mystery of the Lost Trombone

During the season of Lent, church tradition bans the word “Alleluia” during worship. Lent is a time of reflection and repentance. In choir rehearsals, however, we are already singing “Alleluia” in preparation for Easter. Not only that, but we are also rehearsing with the brass choir.

On Wednesdays during Lent, we go to church for a Lenten supper and worship. Ed has been meeting us at church after work, so I have the responsibility of bringing his trombone to church for rehearsal. He doesn’t want it to sit in the cold car because that affects the tuning of the trombone. This past Wednesday, I brought his trombone into the building and set it on the floor under the coat rack.

We went into the gym to eat Chicago style hot dogs and macaroni and cheese. (We eat well on Wednesdays!) After our worship, Ed went out by the coat rack to get his trombone for rehearsal. He came over to me, and said he found his music folder, but where was his trombone? I was a little irritated (as wives tend to be with husbands) as I told him it was right by his music. I mean, seriously, how could you not see a trombone?

I took him to the place where I had put his trombone AND IT WAS GONE!

Since our church also has a school, we thought maybe the band director had taken the trombone and put it somewhere safe. We ran all over the church and school looking for it, while our pastor made some phone calls. No one knew where Ed’s trombone has disappeared to. I finally took the girls home while Ed went to choir.

We hadn’t been home for long when the pastor called. Ed’s trombone was found…in the kitchen pantry! The after-school care teacher had thought it was a kid’s trombone, and put it in the pantry for safe keeping. What a relief! (Dare I say…Alleluia!) Pastor took the trombone to Ed and he was able to rehearse his brass piece with the choir.

Brass Choir

Easter is coming soon, and I think we’ll be ready!

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A Research Opportunity

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.

Emmy research
Emmy has sensors around her feet, wrists, waist and shoulders.

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, 2016 Read more here.

Lily research
Lily standing still, with the sensors measuring how much she sways while she stands.

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.

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