Fundraiser Planned to Honor Central City, Kentucky Girl Who Died of Rare Disease
Thea Flener passed away from complications of Metachromatic Leukodystrophy Disease at 3 years old. The event's organizers say funds raised will go to raising awareness and researching a cure for this rare disease in her honor. #SaveTheDate
There has been so much loss and so much change for the Flener family over the last few years. Young Thea Flener passed away tragically in 2020 due to MLD. Scottie and Meagan Flener died in their Central City home during the devastating tornado outbreak in December. A fundraiser is planned to honor this beautiful family and raise awareness for Metachromatic Leukodystrophy Disease.
Thea Flener, age 3, of Central City, died on January 10, 2020, of Metachromatic Leukodystrophy Disease. She was a welcome addition to her parents, Scottie and Meagan Flener. Her brother Landon Lafollette, and sisters Alizabeth Lafollette and Kenni Lafollette were so excited when Thea came into their lives. Metachromatic Leukodystrophy Disease (MLD) is a very rare terminal inherited disease that affected sweet Thea. She touched so many lives and her death left a deep wound that will never heal.
SCOTTIE AND MEAGAN FLENER
Scottie and Meagan Flener, each 34 of Central City, died on December 11th, 2021, after a large tornado tore through Muhlenberg County. They are sorely missed by their three children, Landon, Alizabeth, and Kenni Lynn Lafollette, as well as many siblings, friends, and family members. They dedicated their lives to raising awareness for Metachromatic Leukodystrophy Disease so no child would succumb to it.
Team Thea is dedicated, on behalf of Thea, Scottie, & Megan, to picking up their passion to increase MLD awareness and bring MLD newborn screening to Kentucky.
WHAT IS METACHROMATIC LEUKODYSTROPHY DISEASE?
Thea Flener was born a healthy baby girl in 2016. This was before Metachromatic Leukodystrophy Disease overtook her little body.
MLD is a RARE hereditary disease characterized by the accumulation of fats called sulfatides. This causes the destruction of the protective fatty layer (myelin sheath) surrounding the nerves in both the central nervous system and the peripheral nervous system. As of today, there is NO CURE for MLD in the United States.
RIDING THE STORM OUT FOR MLD BENEFIT
There's a Poker Run and Bike Show planned for July 1st, 2023. Bike registration will begin at 9 AM. The Poker Run will start at 11 AM.
*BikeShow- $20 to Enter a bike.
*PokerRun/Benefit Ride - $20 to Enter/$2 a card.
*Benefit Ride chauffeured by Muhlenberg Co. Sheriff's Office.
All proceeds will be donated to MLD Foundation whose sole purpose is to work with MLD. Working together we will be putting our efforts towards such things as birth screenings for MLD for newborns. This alone would have been a life changer for Thea and will be for so many more that can start being treated right away with the new treatments in development instead of after symptoms appear when it's too late.
Can’t wait to be a part of it all this year in person!! Wish I had gotten to meet the family in person. We only got to talk on the phone. Team Thea are angels carrying on for Thea and her parents. - Teryn Suhr
TEAM THEA BENEFIT
The Team Thea Benefit will take place at the FRATERNAL ORDER OF EAGLES #3345 in Central City. There will be live music, and more! All donations benefit MLD Foundation and are tax-deductible.
*Benefit- $5 Cover Charge
*Raffle* *HalfPot* *Silent Auction* *Cornhole* *And more!
If you would like to donate, sponsor, or help in any way please contact JoJo Joyner at 270-743-7818 or by email at email@example.com.
BECOME A SPONSOR
Eagles – 101 Eagle Drive, Central City KY