By Steve Robinson | February 10, 2019 - 7:43 am
Posted in Category: The Normalite

For Carson Damery, helping a family member who has a rare medical condition was something she knew would take all the help she could find. And as a sixth grader at Chiddix Junior High School toward the end of the last school year, she wanted to enlist the help of her classmates by telling them the story of her young cousin, five-year-old Max Chapman, son of Todd and Corin Chapman.

Max is living with a condition, known as peroxisome biogenesis disorder, or PBD, a rare condition which causes those afflicted with it to lose eyesight, hearing, and motor function. People who are afflicted with it usually see it develop between ages 5-10. PBD, also known as Zellweger Spectrum Disorder, or ZSD, is extremely rare and affects approximately 1 out of 50,000 children. Only a few hundred children are known to be diagnosed with PBD worldwide. A degenerative disease, there is currently no cure though ongoing medical research continues to seek a cure. Lessons at school in genetics last year got this young lady curious about finding some way to enlist help to raise funds for helping end the disease.

Toward the end of last year, Carson, daughter of Nate and Heather Damery, approached her teacher at the time, Jenny Snyder, to seek ideas for involving her classmates in helping with the cause, explained CJHS Associate Principal Wendy Davis. Snyder added Carson wanted to present to her fellow classmates the reasons for wanting to involve them in helping raise awareness of the condition and funds to find a cure for it. Snyder encouraged Carson to touch base with her once she entered seventh grade this year so see what kinds of fundraising opportunities could come about as a result.

To raise awareness, Carson addressed all 650 students in her grade level this year, using a Power Point presentation she created to inform them of the condition and why she wanted to raise funds. She calls her effort “Mission For Max.” When she presented, Carson wanted to lay out the cause to them and “see what the reaction of the students would be,” she said.

After Carson gave the presentation, “The students were empathic and overwhelmed with ideas,” Davis said.

During this school year, Carson, now a CJHS seventh grader, has helped to see that there has been one week-long fundraiser already — a fundraiser where, during that week, students brought pennies in one day, nickels the next, then a day of dimes, then a day of quarters, ending in bringing $1 each by Friday, hoping to earn $500. But as a result of the students’ efforts, Carson, Davis, and Snyder attended a recent Normal-based Unit 5 Board of Education meeting and announced that more than the amount of money sought was what was raised. That meant a total of $3,698.90 was taken in.

While that amount was a wonderful start, there is another fundraiser this week the kids are planning to hold. Up next will be a Valentine’s dance for all CJHS students which will take place Friday, Feb. 15, hosted by CJHS’ Student Council. The school has a student population of 600, Davis informed. “The Student Council said they wanted to help,” she added.

And there is yet another event in the works, Carson said, but it’s hoped the weather will be much more cooperative than it is now by the time this next event is scheduled. What’s being considered, Carson said, is a miniature golf tournament at the end of the school year. That event is planned for Pheasant Lanes Family Fun Center on May 5. The family also does an adult golf fundraiser every year which states the full name of the disease. The event is called “Tee It Up For Global Foundation For Peroxisomal Disorders,” or GFPD. That event will take place again with a reception and silent auction May 16 at Illinois State University’s Alumni Center followed by the golf scramble event at ISU’s Weibring Golf Course May 17. According to the golf event’s website, last year’s outing raised over $138,000.

Davis said after CJHS students were informed about the cause and Carson’s efforts, “Our kids are super empathic and really wanted to be involved.”

Now, this fundraising effort will continue throughout this young lady’s time at CJHS, Snyder said. And one would think once Carson departs for high school in a couple of years, CJHS’ student body might themselves move on to other causes. Not so, Snyder said, because when Carson’s younger sister, Campbell, enters CJHS two years from now, she will pick up where Carson left off.

Davis said continuing the project beyond Carson’s years at CJHS is a good idea because of the close connection between the girls and the school and because it represents a carrying on of tradition for CJHS’ students, the families involved, and Unit 5. “At the junior high level, we teach empathy and kindness and this project just personifies all of that,” Davis said.

In addition to teaching kindness, Snyder added, “What really makes this work is that the kids know Carson, and her sharing a personal story makes it more tangible for the kids. They can see a picture of Carson and Max and realize, ‘Oh, this is what she’s talking about.’ That makes it more real for them.”

And that’s a good thing because, after all, PBD has been a reality for the Chapmans, the Damerys, and other families who have seen a loved one afflicted by it. If these kids can do anything to help out and learn and have a little fun while doing it, it becomes a win for everybody concerned.

This entry was posted on Sunday, February 10th, 2019 at 7:43 am and is filed under The Normalite. You can follow any responses to this entry through the RSS 2.0 feed. Responses are currently closed, but you can trackback from your own site.

Comments are closed.