Catching up — and cheering — with KayleeWritten by Vicki L. Kroll | | firstname.lastname@example.org
Seeing Kaylee Halko before her cheerleading practice, two things are clear: She is the smallest — and the most loved.
The feisty 8-year-old was surrounded by girls stopping to say hi, give her a hug and be entertained. Kaylee tickled one friend with her pint-sized pompoms, and grabbed another and started waltzing.
“Kaylee is so funny!” one girl said.
As they lined up and started cheering, friends offered pointers and encouragement to the Monclova Primary School second-grader.
One cheer seemed perfect for Kaylee: “Let’s get rowdy/ Let’s get crazy/ Let’s have all the fun we can.”
“She’s a comedian and likes to make everyone laugh,” said Stephanie McConnell, director of the Anthony Wayne Junior Cheer Program, which consists of 137 girls. “She definitely likes attention.”
Kaylee’s star power radiated on ABC’s “20/20” thanks to Barbara Walters’ special, “7 Going on 70.” The report aired in September 2010 and recently was repeated as the special received an Emmy nomination for outstanding feature story in a news magazine. The show explored the lives of three girls with progeria, a rapid-aging disease.
“I’m excited for the families that the hour got nominated for an Emmy,” Muriel Pearson, co-producer of the special, wrote in an email. “They shared so much of their personal lives with us so that our audience could learn and empathize about their daily experiences living with progeria.”
“The Emmy nomination is real exciting because it’ll bring more recognition to the Progeria Research Foundation and hopefully that will help raise funds and awareness,” said Marla Halko, Kaylee’s mom.
Tim Halko saw a surge in members in the Facebook group he started for his daughter to increase progeria awareness. Before the show, there were about 3,500.
“It went up over 8,000,” he said. “The week after the special, I’d come in to work and have thousands of emails.”
While the numbers leveled off, she still counts more than 6,700 friends. No doubt they will be cheering for the special to win an Emmy on Sept. 18.
“I have heard from people, donors and others, kids who want to help who saw that special, and the word that kept coming up over and over again was inspirational,” said Audrey Gordon, president and executive director of the Progeria Research Foundation. “These kids really inspired people to want to help and want to do better in their lives, to just be better people, and it was just a wonderful reaction to the show; they fell in love with these girls and really appreciated them.
“We appreciate that someone like Barbara Walters and ABC are out there raising awareness of this condition because that is one of our key challenges: We need to find all these children, and we can’t do it without help from the media; it’s vital.”
There are 80 children with progeria in 31 countries, Gordon said, adding, “We think 65 children will qualify to participate in the new drug trial.”
A study published in Science Translational Medicine in June hailed rapamycin as a possible treatment; it found the drug decreased the disease-causing protein progerin by 50 percent.
The Progeria Research Foundation, a nonprofit organization dedicated to discovering treatments and a cure for the fatal genetic condition, provided tissues and cells for the study.
“We are going to use a rapamycin-like drug in a new trial, so we’re now going to have four drugs; we’re going to add this one to the other three that are being tested now with the children,” Gordon said.
She said the new study will cost about $3.5 million and start in 2012.
Tim and Marla hope Kaylee can start the new treatment in January.
“With a disease like this, it’s a rapid-aging disease, you don’t have time,” Marla said. “I know everything has to be done properly, but still, as a mom, it’s really frustrating — I’m ready to start [the new drug] because it sounds so amazing, to see what we can stop before it happens.”
A progeria fundraiser will take place at 7 p.m. Sept. 28 as the Lourdes University Gray Wolves take on the Siena Heights University Saints at Tam-O-Shanter, 7060 Sylvania Ave. in Sylvania.
Admission is free; donations will be collected at the door.
“We’ll pass the hat around and have a 50/50 raffle,” said Lourdes Head Volleyball Coach and Assistant Athletic Director Greg Reitz.
“This will give Kaylee the experience and fun of being at a volleyball match, and hopefully that will do something for her and for the players too,” he said.
Kaylee’s Course fundraiser
Kaylee’s Course, the sixth annual race for progeria research, will take place at 10 a.m. Oct. 8 at Monclova Primary School, 8035 Monclova Road.
Cost is $12 before Oct. 1 and then $15 for the 5K run/2-mile walk; children 10 and younger are free.
There also will be a silent auction and raffle.
Proceeds will go to the Progeria Research Foundation.
Tim and Marla Halko are looking for silent auction items and sponsorships. Contact them at email@example.com or (419) 878-3231.
“Every year, I’m surprised by how much people give and support Kaylee, just how they treat her, and we’re really thankful for that. They make her feel like a rock star, and that is awesome,” Marla said. “With the funding and support, I’m hoping something will be done in her lifetime and I think it is being done, so I want to say thank you to everybody.”
Marla said that Whitehouse resident Heather Kudzia, mother of 15-month-old Carly who was also diagnosed with progeria, told her she plans to put together a team for Kaylee’s Course.