Children Living With Progeria: Inside Their World


Young Girl Lives in Body Older Than Her Grandmother's

Being a young girl in a body that is biologically older than that of her grandmother takes a toll. Lindsay's leg muscles hurt at school during recess, so every week she goes to the chiropractor for a checkup and adjustment.

"She's six years old and she runs and jumps but has the spine of 70 year-old," Labo told us last year. "She feels aches and pains and isn't aware of what it is, but there is arthritis forming slowly throughout the spine."

For most of her life, Lindsay has been protected within a cocoon of love and empathy. But sometimes, the strangeness of her symptoms -- especially her tiny size -- strikes a brutal blow to her self-esteem. When the spunky little girl is mistaken for a two-year old, she instantly deflates and responds: "I'm not a baby."

"That'll of change the whole mood of her," Joe said. "You see her face and you see that for a brief moment the glow has gone out her eye."

Her mother tries to shield Lindsay from the constant stares. "I try to position myself so that she doesn't see it because I don't want it to hurt her as much as it hurts me," Kristy Ratcliffe said.

Three-Feet Tall and Fearless

As one of only nine girls in the U.S. who has progeria, it can be isolating for Lindsay. Amazingly, Kaylee Halko, now 8, who has the same rare condition, lives an hour away in Monclova, Ohio. The two girls have become friends and because of progeria look strikingly similar. Kaylee is a confident, boisterous and fearless.

"[Kaylee] likes to say she's a star," her mother Marla Halko said.

The youngest of four children in the Halko brood, Kaylee -- at only three feet tall and weighing 24 pounds -- is noticeably different from her older brothers, but they have a close, loving relationship.

"We don't really think about her having a disease. We just think of her as a normal person," her eldest brother T.J. said.

Kaylee loves to dance and is enrolled in a cheer dance class with regular kids. Despite worries about osteoporosis, a common symptom of progeria which makes her bones unusually brittle, Kaylee insists on riding the big yellow bus to school just like her brothers and millions of other kids across the country.

The pint-sized chatterbox told Walters that the main difference between them was their hair. "I have a bald head and you have hair," said Kaylee, who longs to grow curly hair and sometimes wears wigs.

"She's so happy and she has this condition and she just lives!" said her mother.

Finding a Cure for Progeria

All this optimism may seem oddly out of place, when Kaylee is unlikely to live to be a teenager. The life expectancy of most children with progeria is only 13. She is participating in one of two clinical drug trials aimed at developing a cure for progeria and takes several different medicines with the hope of slowing down the aging process.

"It is too early to tell if it working or not," said Marla Halko.

Lindsay is also enrolled in the drug trial along with 27 other children. She completed a part of this experimental program in 2009. Now, she and Kaylee have joined a second larger trial which includes 45 progeria patients from 24 different countries.

Another one of the participants is Hayley Okines of Great Britain; at 13-years-old she is one of the oldest surviving children with progeria in the world. Like Lindsay and Kaylee, she has the hallmark bald head, tiny stature and lives her life in the shadow of an ever-present threat.

"The first thing I think about when I wake up in the morning is whether today is going to be the day I lose her," said her mother Kerry Okines. "The only way I cope is by saying to myself that Hayley's going to be the one to prove the doctors all wrong."

Hayley and her parents have been hopeful ever since she joined the progeria drug trial, which is testing a pill originally developed for cancer, which could reverse the dramatic instability in her cells. She believes she sees small signs the pill is working.

"I've got eyebrows and I've got eyelashes and I've got hair on my arms," she said.

Despite progeria, Hayley sees herself as a person not a disease and has all the interests of an average pre-teen, including fashion, photography and a crush on pop-star Justin Bieber.

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