“It’s Emalyn’s world and we’re just living in it”: 7-year-old receives wish during fight with Batten Disease
CUMBERLAND, Ky. (WYMT) - Seven-year-old Emalyn Halcomb was diagnosed with CLN14 Batten disease back in 2020 after he parents noticed something concerning with the way she was walking.
“Nobody really knew what was really wrong with her so someone had suggested to the ER in Cincinnati Childrens,” Emalyn’s mother, Megan Halcomb said.
The four-hour road trip led to a diagnosis of a rare type of Batten disease that left the parents in shock.
“The day we were at the geneticist and we got her diagnosis, they brought me two sheets of paper and they said ‘this is all that is on the entire internet that anyone knows about CLN14’,” Megan Halcomb said. “It is a terminal illness so the first few months in that first year, it was really just depressing.”
At the time of the diagnoses, Megan Halcomb said there were less than 35 cases of CLN14.
The Halcomb family got connected with the Make-A-Wish foundation, which gave Emalyn an experience unlike any other.
“To see how happy she was down there and how healthy she was,” Megan said. “She didn’t have any jerks, any tremors, she ran all over the park so she had the best week we could have asked for.”
Emalyn got the chance to meet Princess Ariel and take a trip to Disney’s Give Kids The World Village, a theme park for families with children who have life-threatening illnesses.
“Down there she was just another normal kid and I love it because they’re an awesome foundation and she just got to be a regular kid,” Megan said Like everybody had to work around her, and fit in with her, instead of her having to fit in with us.”
An experience that Megan and Robbie Halcomb are grateful for.
“It’s definitely a great experience to do make a wish and that’s probably one of the best organizations to help kids enjoy what they have,” Robbie Halcomb said.
The Halcomb’s also shared gratitude for the community support they have received, including Jim and Greta Rich, who gave Emalyn her first Disney experience before they got involved in the Make-A-Wish Foundation, and the Liggett Baptist Church.
Through her battle with CLN14, Emalyn has continued to bring a positive spirit and share valuable lessons with those who meet her.
“She’s really showed us how to look at the world differently and how to look at life differently,” Megan Halcomb said. “But we always joke around and tell everybody that it’s Emlyn’s world and we’re just living in it ‘cause it really is.”
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