Morse community rallies behind Thompson family
Morse Elementary is helping bring awareness to Rare Disease Day, and, in particular, Infantile Neuroaxonal Dystrophy.
Jeannine LeJeune is the online editor for the Crowley Post-Signal. She can be reached at email@example.com or 337-783-3450.
At Morse Elementary, there are many special children, but Thursday, the student body, faculty and staff of the school rallied around one that is asking for Acadiana’s help.
Kennedy Thompson lives with her young brother, Drew, and mother and father, Jennifer and Eric Thompson, in Crowley. She is now 13 years old and is currently battling a rare disease that doctors classify as terminal — Infantile Neuroaxonal Dystrophy (INAD). But it wasn’t always like this.
Thompson was once a walking, talking and vibrant toddler. Then, she began to slowly lose her abilities to bear weight on her legs, then to crawl, sit and even roll over. She also eventually lost her ability to speak.
Today, she can no longer communicate or move with any part of her body. But, while this regression began in her toddler years, it wasn’t until age 9 that Thompson was diagnosed with the rare INAD; the life expectancy of which is only 5 to 10 years.
Thompson is quickly running out of time and her family is asking for the community’s help.
Part of that call was answered Thursday by Morse Elementary School students, who wore shirts in honor of Thompson as they learned more about and brought awareness to Rare Disease Day, observed Feb. 28 each year.
It was a small gesture in the grand scheme of things, but one that has meant a lot to Thompson’s family as they have expressed many thanks to the school for doing so.
Now it is Thompson’s family’s turn to bring forth more awareness to the disease. There are approximately 25 families in the world that have seen a child diagnosed with INAD, 16 of whom are in the United States. Research for the disease remains very minimal as most disease research funds — grants and other money — go to the larger, more common diseases.
So far, INAD’s minimal research has linked this gene to Parkinson’s Disease, but very little else is known about INAD.
So, Thompson’s family and other families have taken it upon themselves to raise the funds for research into the disease. A doctor and researcher that is willing (and eager) to start a program and develop a treatment plan for INAD kids has been found at the University of Washington in St. Louis. The researcher has a proposal of two years of research at $75,000 per year, or a $150,000 project. But the money is just not there.
There are several fundraisers going on, but Thompson’s family is calling on the Acadia community to join Kennedy Thompson’s #iCAN4KENNEDY. The fundraising efforts can be found online at www.ican4kennedy.com, which supplies more information into the fundraising campaign as well as ways to donate.
Locally, there will also be a special day to help Thompson and the other INAD families fund the research with a Skeet Shoot and Family Day on April 18. Beginning at 8 a.m. at the Fournerat Hunting Club, located at 18500 Meredian Line Road in Kaplan, there will be a multitude of events and activities.
Among the events scheduled are a skeet shoot, auction, kids’ center, fun jumps, raffle and much more. Food and drinks will also be sold. There will also be live music, featuring T. J. Gautreaux, Blaine Roy and Second Wind, Bronco Jr. and Band, Corky Mire and DJCrak.
For more information, visit the ican4kennedy.com.