Kaylee Halko couldn’t wait for Aug. 21. She wore a pink shirt and tennis shoes, black shorts, a white hat with a pink ribbon on it and a white sweatshirt. The 6-year-old grabbed her Barbie backpack and headed to the bus stop with her brother, Jacob, 8.

She climbed aboard bus No. 32 bound for Monclova Primary School for her first day of kindergarten.

Millions will get a glimpse of her big day. A documentary on Kaylee is being filmed for TLC, which plans a December premiere. The working title of the film is “Old Before Their Time.” TLC released this description: “This one-hour documentary follows the extraordinary stories of two young girls suffering from progeria and the hope of finding a cure for this rare disorder, which causes the body to age eight to 10 times faster than normal.”

It took almost three months for Tim and Marla Halko to decide if their daughter and three sons would be in the documentary.

“We wanted to make sure it was the right thing for us and what kind of story it would be,” Marla said. “It’s basically how Kaylee lives, and it’s going to address progeria. We thought that would be a good way for people to learn about the disease.”

Cameraman Sean Lewis, left, and producer Suemay Oram, far right, interview Kaylee Halko for the upcoming TLC documentary.

“It’ll focus more on the fact that — besides looks — she’s your typical, normal 6-year-old. I think that’s what they’ll see,” Tim said. “She’s as goofy as any other 6-year-old.”

Filming Kaylee’s story are director and producer Suemay Oram and cameraman Sean Lewis. They are freelancers working for Blink Films of London.

“We haven’t been to school yet as it was Kaylee’s first day, and we thought it would be best if she just did it by herself without any of us there,” Oram said. “We filmed her getting on the bus, though. I think that was the biggest thing for her, to get on the bus with the older kids.”

“Kaylee wanted the bus. I wasn’t sure. But she did it. She went up and down those steps; she did fine,” Marla said. “It made me nervous, but it’s been a big deal since last year — she wanted to ride the bus.”

No challenge is too big for Kaylee, who stands about 36 inches tall and weighs 21 pounds.

She is one of 53 children in the world who has progeria, a rare, fatal condition characterized by accelerated aging caused by a gene mutation. The disorder has a reported incidence of about one in 4 million to 8 million newborns, according to the Progeria Research Foundation Inc. Signs of progeria include growth failure, loss of body fat and hair, stiff joints, aged-looking skin, hip dislocation, generalized atherosclerosis, heart disease and stroke. Children with the condition die of heart disease at an average age of 13.

Kaylee started the first clinical drug trial for progeria in 2007 and will begin a new triple-drug trial this month.

And she loves the camera.

“Kaylee is a comedian,” Oram said. “She is very, very funny and very approachable and very adventurous; she’s not scared of anything.”

“I think all the kids like [being in the documentary]. Kaylee thinks she’s a star,” Marla said.

Oram and Lewis were in Toledo one week in August. They hung out at the Halko home in Monclova, followed the family around town and to Cedar Point, and visited the University of Michigan to talk to the doctor who diagnosed Kaylee in 2004.

“I hope people get to know Kaylee — I think that’s the main point — and for people to understand progeria,” Oram said. “Maybe when they see Kaylee, they won’t stare, they think, ‘Oh, she’s got progeria, I understand what that is.’ I think that’s important — they get to know her, raising awareness, getting to know the family.”

Oram and Lewis seemed at home with the Halkos. After eating dinner, both put their plates and utensils in the dishwasher. And while Lewis got the camera ready, Oram showed Brendan, 9, a magic trick with a deck of cards.

Outside, Oram told the family they were going to film portrait shots. After she arranged everyone, Kaylee kept making faces.

Tim said, “Kaylee! K-Ray, it’s time to be serious!”

“You want to look beautiful, Kaylee, not crazy, beautiful,” Marla coaxed.

“The Halkos are an awesome, awesome family. I’ve had more fun on this shoot than I’ve had on pretty much any shoot,” Lewis said. “I hope [the documentary] gives a greater understanding of progeria and really what a lovely girl Kaylee is and the support the community gives to the Halkos and what it is to strive for a cure.”

Oram and Lewis will return to finish filming next month. They’ll be here for Kaylee’s Course, the fourth annual race for progeria, which will start at 10 a.m. Oct. 10 at Monclova Primary School, 8035 Monclova Road.

Cost for the 5K run/2-mile walk is $12 for those who register in advance and $15 the day of the event; children 10 and younger are free. Registration begins at 9 a.m. race day. A silent auction also will be held. Proceeds will go to the Progeria Research Foundation, a nonprofit organization dedicated to discovering treatments and a cure for the condition.

Last year, about 300 people braved the heavy rain and hit the trail. About $40,000 was raised. The Halkos have raised $110,000 in three years.

Participants who register early will receive a T-shirt designed by Kaylee’s older brother, T.J., 11.

Register via e-mail to Tim and Marla at tmhalko@msn.com. Silent auction items and sponsorships also are needed.

Triple-drug trial for progeria commences

From left, Jacob, Brendan and T.J. with their sister Kaylee.

As the first clinical drug trial for progeria winds down, researchers are gearing up for round two.

Kaylee Halko is one of 28 children from 16 countries in the first trial. She has been treated with farnesyltransferase inhibitor (FTI) for two years. Researchers hope FTI prevents a molecule known as the farnseyl group from attaching to the progerin protein, improving or stopping the disease, according to the Progeria Research Foundation Inc.

Studies showed FTI improved bone density, reduced bone fractures, delayed the onset of the condition, and helped with weight gain in a mouse model of progeria.

Results are expected to be published in April, according to Audrey Gordon, president and executive director of the Progeria Research Foundation.

“Right now we do have treatment recommendations, but they’re more for quality of life types of things — some nutrition to get more weight on the children and aspirin to help with their heart, and occupational and physical therapy for their stiff joints,” she said. “So while those are all great treatments that do help somewhat, to have a drug treatment be effective in some way would be history-making and would be extremely exciting for everyone involved. We won’t know until [the results are] formally published.”

Meanwhile, researchers have added two drugs — pravastatin and zoledronate — to the assault.

“After the first trial started, new studies came out that said, ‘hey, we think there are two other drugs that may be helpful that attack this mutant protein at different places along the pathway than the FTI drug,’” Gordon explained. “I call it the triple whammy; we hope all three of these drugs work together well and are even more effective than the current FTI drug that’s being used now.”

When Kaylee goes to the Children’s Hospital Boston this month for her final visit for the first trial, she’ll start the triple-drug trial.

“We’re really not wasting any time,” Gordon said. “We’re just really excited to move right into this [trial], to not have to wait a couple more years for another trial to be started.”

Kaylee will be one of 45 children in the new study who will be monitored by researchers from Children’s Hospital Boston, Dana-Farber Cancer Institute, and Brigham and Women’s Hospital — all Harvard University institutions — and their local doctors. Investigators from the Warren Alpert Medical School at Brown University, UCLA and the National Institutes of Health also are involved with the trial.

The Progeria Research Foundation raised $2 million for the first trial and needs $1.7 million for the new study.

“Close to 90 cents of every dollar goes to our programs, goes to the medical research, to the trials, to the grants, to raise awareness. That’s a very high percentage compared to some other charities,” Gordon said.

‘We’ve accomplished so much in such a short time with so little money. In 10 years, [we’ve raised] about $7 million,” she said.

Since 1999, the nonprofit foundation has discovered the LMNA gene causes progeria; established a test to determine if children have progeria; started cell and tissue banks; and raised funds and launched the first clinical drug trial.

“[Funding is a] bit of a challenge, but we’ve never not met a challenge, so we’re really excited about just keeping on going,” Gordon said.

This entry was posted on Thursday, September 17th, 2009 at 7:10 pm and is filed under Community, Featured, People.
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