The New Melle Chamber of Commerce Community Easter Egg Hunt will be Saturday, March 31, 2018 at 10 a.m. at New Melle Sports and Recreation. New this year will be the addition of an Adult Easter Egg Hunt to benefit Cystic Fibrosis (CF). There are several families in the local New Melle area affected by the disease.
One local CF patient, Libby Thornton, has been educating her peers and others for several years. Libby first spoke about CF in third grade when she and her doctor talked to her classmates about her disease. Libby did a slide show and video about herself and her family life, with her pets, etc. She said, “I just told them things like ‘Even though I cough a lot, I’m not contagious.’” And she explained some of her daily treatment activities and medications.
Through the years, Libby kept talking — to her classmates, upper classmen, school assemblies and other public events.
In 2013, Libby was the Cystic Fibrosis Foundation’s Youth Ambassador. As such, she was given the opportunity to throw out the first pitch at a St. Louis Cardinals Game. She was also invited to the Jack Buck Golf Classic — the longest-running charity golf tournament west of the Mississippi — started by Jack Buck when he was the CF Foundation’s Honorary Chairman. The Golf Classic is comprised of two events – a Thursday night Dinner & Auction at which Libby spoke and dined with Jack Buck, Jr. as his special guest, and the Monday Golf Tournament, where Libby said she, “Got to play hooky and drive a golf cart!”
A few years later, Libby spoke on behalf of the Gateway CFF St. Louis at the Ritz Carlton Hotel in St. Louis. She spent the night at the hotel and had High Tea with the hotel owner. While she was there, the kitchen staff took up a collection and gave her a check for her team, Live, Laugh, Libby, for $503.88! “I’ll never forget it,” she said. “They made a big deal out of it. The Chef came out with this great big check! It was awesome!”
This past November, Libby and her parents were invited to speak on behalf of CF at the Sandberg, Phoenix & Von Gontard Law Firm in St. Louis. Each year the firm selects three non-profit organizations to receive proceeds from the firm’s philanthropic activities throughout the year. Libby spoke, as well as Nicole Lowrey, Development Director of the CF Gateway Chapter St. Louis. Lowrey talked about the CF Foundation and the work they do. Libby talked about CF patients she knew who had passed away, including a fellow student in her grade at Francis Howell who died last August; plus Lowery’s god-daughter who died at age 12; and Dalton Prager (from the New Melle area) who lost his battle with CF in 2016. Libby also talked about her own personal struggles, “This is a disease I have to live with every single day, and even if they find a cure, I’ll always be stuck with it. It’s part of me — but it is not all of me,” she said. Despite being extremely nervous to get in front of a room full of attorneys, Libby knew she touched some hearts when she saw tears in some of the listeners’ eyes. A few weeks later, she learned that The Cystic Fibrosis Foundation was chosen as one of the firm’s three benefactors for 2018.
Libby loves to write and is studying journalism at FHHS, where she is Junior Editor of the School Newspaper. She credits a teacher with encouraging her to write “with a purpose,” and that has motivated her to try to write meaningful articles for the school paper. Libby also has pen pals all over the world — other CF patients with whom she shares experiences and encouragement.
When Libby asks, as anyone in her situation would, “Why me?” her mom tells her, “God gave you a voice. Use it to educate and spread awareness.” Libby credits her family, friends, classmates and community with keeping her strong and motivated. She says, “I’ve received so much support and encouragement from the community, and that motivates me to keep speaking and educating and sharing my story.”
Libby’s daily treatment regimen includes taking over 50 pills, including enzymes every time she eats because CF patients cannot otherwise absorb vital nutrients from their food, plus vitamins morning and night, plus 8 breathing treatments, and an airway clearance treatment twice a day. The airway clearance system is a vest that inflates, then literally shakes her. CF causes sticky mucus to build up in the lungs. The vest helps loosen the mucus so she can cough it up.
Libby was diagnosed with CF at birth. She suffered a complication known as Meconium ileus, a bowel obstruction that caused her intestines to rupture. Most babies with meconium ileus have cystic fibrosis. She had several surgeries and procedures in her first week of life just to keep her alive.
Libby’s parents received support from the Cystic Fibrosis Foundation when Libby was an infant; and started participating in fundraisers for the organization as a way to give back for the help they received. In 2008, they came up the team name “Live, Laugh, Libby” for the Annual CF walk, and they have been fundraising under that name ever since.
Libby’s mom, Amy Thornton, said, “The Cystic Fibrosis Foundation is one of the best rated national fundraising organizations in the country. The Foundation does wonderful things, from helping families financially to researching new medication. There is a new medication just recently approved that may be able to help Libby. It’s very exciting! That’s why we do the fundraising we do.”
Other Families Affected
There are several other families in our local area affected by Cystic Fibrosis. Dalton Prager, mentioned above, has two cousins afflicted with the disease, Kayla and Hannah Krumrey. Dalton’s mom, Renee Strauser, and her sister Tammy Krumrey, are part of the Maze family, which sponsors the Maze Collision Repair Golf Tournament every year to benefit Cystic Fibrosis.
Another local CF patient, Kelly Wever, received a double lung transplant in January 2017. Her positive spirit and compassion for others throughout her lifelong fight with Cystic Fibrosis has resulted in her receiving several awards in the CF community. She has become a role model for children and adults suffering from this chronic illness.
Kelly Wever’s sister, Julie Sanford, and her husband, Ryan (Ryan Sanford-Equity Prime Mortgage) are co-sponsoring the New Melle Adult Easter Egg Hunt along with Rich and Lori West (Overstock Outlet) in Wentzville. Major prizes awarded during the hunt will be donated by the sponsors. Other prizes to be awarded will also be donated. There will be a $10 entry fee for the adult hunt, which will be donated to the CF Foundation through the Live, Laugh, Libby team. Plan now to come out and have a great time while supporting a great cause!