The third annual Butterfly Ball Masquerade was a bittersweet but “sparkly” celebration. The crowd of attendees dressed in their best formal wear, complete with glittery masquerade masks, at the event held Nov. 23 at the Cook Museum of Natural Science in Decatur. The people buzzed around the joyful event, which was filled with lots of fun, glitter, smiles and the color purple – the favorite color of the little girl the event honors and remembers, Kayleigh McClendon.  

Remembering Kayleigh 

This marks the third year since the passing of Kayleigh, the daughter of Tim and ‘Carrow McClendon of Hartselle. Kayleigh, 7, was diagnosed in May 2016 with Diffuse Intrinsic Pontine Gliomas, an aggressive brain cancer that, at the time, had 0 percent survivability. She passed away six months later in November 2016.  

During Kayleigh’s treatments at St. Jude Children’s Research Hospital in Memphis, her mother wrote daily online updates of her daughter’s condition and the community’s outpouring of support on her blog, Prayers For Kayleigh. 

The day after Kayleigh passed away, ‘Carrow wrote, “I don’t know how we are going to continue on, I just know that we will. That God is going to continue to meet us where we are. He’s going to continue to carry our burden. And for now, I am going to continue to write. I don’t know what else to do.” 

God met them where they were and lifted them up to establish the Prayers For Kayleigh Foundation. The PFK Foundation is a “100 percent charitable organization, dedicated to raising awareness for pediatric cancer; funding cancer research – specifically DIPG; helping children and their families that are battling serious medical conditions; as well as give back to our community.” 

“When we began the Prayers for Kayleigh Foundation, we had no idea what running a non-profit organization would entail; we simply knew we needed to honor Kayleigh by helping others,” the family wrote in this year’s Butterfly Ball Masquerade program. “Over the past three years we have learned, grown and defined our purpose – settling into what build faith, share hope and defeat DIPG truly means.” 

Pediatric Cancer Research and Awareness 

During the Butterfly Ball each year, the PFK Foundation gives the Live Purple Award to honor a special person who lives by “building faith, sharing hope and defeating DIPG and other childhood cancers.” 

This year the award honored the event’s guest speaker: Kooper Rooks, a Hartselle 15-year-old who survived non-Hodgkin’s Lymphoma after a long battle and stay at St. Jude.  

The fundraiser also included a silent auction, dinner, guest speaker, live auction, music and dancing. The event raised more than $40,000 between donations and auctioned items.  

Funds raised will go to St. Jude and to fund PFK community programs. 

PFK efforts include Kayleigh’s Closet, a program that discretely provides warm coats, school appropriate clothing and toiletries to children in need; S.O.S. Support Our Schools, a program that provides classroom tools, supplies and grants to local teachers; and college scholarships to graduating seniors. The PFK Foundation is also partners with St. Jude Children’s Research Hospital to help fund pediatric cancer research, in particular a new DIPG trial.  

“When we went to St. Jude there was zero to do,” ‘Carrow said. “Now they are using a chemo never used like this before… 15 kids are enrolled in the trial.” 

From those 15 patients who have received the trial treatment since Oct. 15, a maximum tolerated dose has been identified. Patients are now enrolling on the expansion cohort to look for early efficacy signals, and eight more will be enrolled and predicted to use the drug in combination with other new drugs to better treat DIPG.  

Upcoming PFK Foundation 2020 fundraising events include: 

• April 18, 2020 – Kasting for Kayleigh Kayak Fishing Tournament in Guntersville 

• May 16, 2020 – PFK 5K & Fun Run at Hartselle Junior High School 
• Sept. 26, 2020 – Crushin’ Cancer Softball Tournament in Vinemont 
• Nov. 14, 2020 – 2020 Butterfly Ball Masquerade in Decatur 

The PFK Foundation is always welcoming people to volunteer and help make these events happen. Sign up for the mailing list and stay updated on the PFK Foundation and volunteer opportunities by emailing name and phone to events@thepfkfoundation.org.