Miramar teens raise money to kick Batten disease

Posted on July 1, 2018 By Editor Junior Residents

Caroline Medley’s kickball team consisted of (back): Josh Brown, Reid Grubba, Luke Morgan and Topher McChesney; (front): Dajhia Preston, Nia Phelps, Mackenzie Kincade, Caroline Medley, Caitlyn Claverie and Clara Trednick.

Even before his death from Batten disease in April 2014, Jake Medley’s sisters, Caroline and Anna, raised money to make sure their once feisty little brother would not be forgotten and the disease from which he died would be better understood.

Organized with help of their parents, Dean and Jennifer Medley, and a committee of friends, the sisters’ latest fundraising effort – Kick Batten for Jake 2018 – a kickball tournament held at the Hendricks Avenue Baptist Church baseball fields May 26, raised more than $5,500 for the Batten Disease Support and Research Association (BDSRA) based in Columbus, Ohio. This was the third consecutive year the Medleys have organized the kickball tournament, collectively raising approximately $11,000 over three years for Batten disease research.

“The ‘Kick Batten for Jake’ tournament is a great way to keep Jake’s memory alive, participating in an activity that he would have loved,” said Jennifer Medley. “Jake was never developmentally capable of playing organized sports like kickball, but he had a passion for balls of any kind and loved to kick a soccer ball into a goal, shoot a basketball into his toddler-sized hoop, or hit a plastic tee with his bat. He adored his two older sisters and loved watching their soccer games. Though his speech was limited, one word he would say over and over was ‘ball!’ It was amazing to see all the people whose lives Jake touched come out and support the event.”

Technically known as Neuronal Ceroid Lipofuscinosis, Batten disease is incurable, extremely rare, and has 14 variants. Jake had the classic late infantile type known as CLN2 disease, said Jennifer, adding there are approximately 400 children in the United States living with CLN2 and 1,500 worldwide. At the time of his passing, Jake was the only child in Jacksonville suffering from Batten disease.

Jennifer said her family feels it is important to give back to BDSRA. “The people of BDSRA were a huge support to us throughout our journey of caring for a terminally-ill child with such a rare disease,” she said.

Eight years ago, to bring awareness to their brother’s affliction, Caroline, Anna and their cousin, Henry Jacqmein, hosted a series of lemonade stands in front of their Miramar home after school to raise money for Batten disease research. With a framed photo of their brother on the table alongside some brochures, the first day they earned $19, but they kept at it, and over the next four years they raised a total of $3,500, Jennifer said.

“The idea of doing a kickball tournament came from my daughter, Caroline, and her friend, Nancy Hudmon, when they were in the 10th grade. Caroline and her sister, Anna, who was in eighth grade at the time, had been holding lemonade stands for years to raise money for Batten disease. They felt they had outgrown this type of fundraiser, so the kickball tournament replaced the lemonade stands.”

Assisting the Medley family in organizing the kickball tournament this year were Lisa Weber, Marti McKee, Paige Dilts, Molly Rhoden, Angela Atkins, Erika Tucker, Paige Prince-Holmes, and Bethany Coleman, said Jennifer.

Approximately 105 children, teens and adults, at least half from San Marco, competed in the tournament, with nearly 40 spectators cheering in the stands, said Jennifer. “We had a raffle and silent auction in which those who were not playing were able to participate,” she said.

Fundraising for Batten disease research is meaningful to the sisters because they continue to cherish their little brother in their hearts. “It’s important because even though Jake has passed, his legacy still carries on, and our hope is that other kids like him won’t have to go through the same thing he went through,” said Anna, a junior at Paxon High School.

Caroline, who will attend the University of Florida this fall, agreed. “It’s important to continue raising money for Batten disease because the disease is so rare, and the BDSRA needs funds to research for a cure,” she said.