By Josh Saunders
A teen with a fatal premature aging condition that causes arthritis is staving off stiff joints – by becoming a hip-hop dancer.
Kaylee Halko, 13, from Toledo in Ohio, USA, was born with progeria, a genetic condition that means her body ages faster than normal.
This means the teen was bald by the age of four, measures only 3ft 5 (42 inches), and requires yearly tests to check for heart problems.
Many with the condition suffer with crippling arthritis, due to progeria drastically decreasing muscle and bone density, however Kaylee has managed to defy it thanks to dance.
Since the age of six she’s been performing hip-hop, dancing up to four times a week, which has loosened her joints and prevented them from stiffening up.
Mum Marla Halko, 39, works for UPS, said: “Progeria is a rapid aging disease, that means she develops problems an elderly person might have like heart disease and arthritis.
“By the time she was two, she had completely lost her hair and started to develop arthritis.
“But the arthritis in her wrists and knees isn’t too bad, which doctors believe is because of her dancing.
“Performing has really helped her, so I’m happy she dances, it keeps her joints loose and stops them from tightening up.
“She’s been dancing since she was six years old and has been a part of the dance team for three years.
“Now she competes in competitions for hip hop and practically every other dance other than tap.
“Hip hop is her best dance, she’s very good at it, I think it’s all the sass in her, she’s very sassy when she performs and absolutely loves it.
“The only trouble she has is getting up and down from the floor, all the rest of the dance moves she can do.
“She can even stand on her head now without any hands, which even kids without progeria struggle to do.”
Kaylee was diagnosed when she was one-year-old, after tests to discover why she was struggling to gain weight revealed she had progeria.
People with the condition typically only live until their early teens due to heart problems making them more susceptible to a heart attack or stroke.
Marla said: “We never think about her having a shortened life span, anyone could die at any point so you can’t dwell on that.
“She’s so full of life you can’t ruin that with negative thoughts, so we focus on the positives.
“When Kaylee found out about the life expectancy for progeria she was very brave and told me, ‘Even if I live until 12 that’s a long time’.
“I don’t stress about things in the future, what we do is just concentrate on the happiness of right now and any moments spent worrying is wasting valuable time with her.
“Kaylee doesn’t act any differently, she just lives and doesn’t think about death, plus who knows there’s so much research – you have to be positive.”
Kaylee is currently on a drug trial from the Progeria Research Foundation, where doctors are taking biopsies of her skin cells and blood tests for research.
Parents Marla and Tim hope the drug will extend her life by seven years and continue to provide her with a normal childhood.
Marla said: “When people would ask about her condition when she was younger, Kaylee would say ‘I’m small and I’m bald’ because to her, apart from her size and hair, she’s just like anyone else.
“When we are out we get a few stares but Kaylee always makes jokes about it, it’s her way of dealing with things.
“She’s just a typical teen she has a lot of friends, loves her social media and dancing, we try not to make her life too much about her having progeria and let her live like a normal 13-years-old.”
Last year, Kaylee became a social media superstar after hitting four million followers on Music.ly – a lip-syncing site where users perform 30 second videos to popular songs.
Despite her parents fears that she would be criticised for the recordings, the teen found fame and now has fans who travel to meet her in person.
Marla said: “In her videos she lip-syncs for 15-30 seconds and puts her own twist on the songs, it’s really big with the kids.
“It’s really funny, after performing at dance shows she has fans waiting to meet her afterwards, they all know her from Music.ly and want to take pictures with her.
“Initially we were worried that people would be mean and didn’t want her to have deal with horrible comments.
“But for every one bad comment there are hundreds of good ones and people coming to her defence.
“Kaylee tells me, ‘there are more people in the world who understand, and those who don’t, won’t stop me from doing what I want to do.'”
Hutchinson-Gilford Progeria syndrome, also known as progeria, is a rare, fatal egentic condition characterised by the appearance of accelerated aging in children, with the name itself deriving from the Greek word meaning ‘prematurely old’.
The Progeria Research Foundation (PRF) believe there are 145 children living with the condition in 45 countries, affecting one in 20million people.
Meryl Fink, Executive Director of the PRF, said: “It’s very often that a dermatologist that will identify the disease first, one of the earliest symptoms is wrinkles of the skin on the abdomen, other indicators can include slower weight gain and growth rate during childhood.
“There are number of benefits for children being diagnosed earlier, they can be eligible to receive the medication – studies show one of the treatments helps keep children’s hearts healthier for longer.
“Diagnosis on the information available in different parts of the world, it’s a case by case basis, some children are quite lucky and diagnosed early.
“It’s a rare disease and world-wide, so we can share with them what we’ve learned so far and to join the clinical trial.”
One of the initial missions of the PRF was to find the cause for the condition, which was successfully discovered in 2003 – now able to identify it through DNA testing they hope to further research and find a cure.
Meryl added: “Up until that point a diagnosis was done by symptoms appearance and examinations, but now there’s an actual DNA test, so children can be diagnosed specifically and start treatment earlier.
“Our main focuses are the clinical trials and research, another part is public awareness – to identify the children and making sure we reach as many as we can.”
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