Teen With Premature Aging Disease Dies — But Not Before Defying the Odds

A British teenager with an extremely rare disease called progeria died on Thursday at the age of 17 — exceeding doctors’ expectations that she would not live past 13. 

At the age of 2, Hayley Okines of Bexhill, East Sussex, was diagnosed with progeria, which causes a person to age eight times faster than he or she normally would. The disease made Hayley 104 years old, biologically speaking. Babies with the genetic disease seem typical when they’re born, but during their first year experience symptoms such as hair loss and slow growth, according to the Mayo Clinic. Typical characteristics also include lack of body fat, wrinkled skin, and osteoporosis. Patients, whose life expectancy is about 13 years (20 years or more in rare cases), usually die of heart problems or stroke.

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Haley had recently contracted pneumonia in both lungs and died the day she returned from the hospital.

Hayley Okines, a 17-year-old girl with progeria, which speeds up the aging process, died on Thursday. (Photo: Old Before My Time/Facebook). 

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In her short life, Hayley accomplished a lot, writing an autobiography called “Old Before My Time” at the age of 14, enrolling in college at 17, and appearing in a television documentary. On Friday, her mother Kerry Okines posted on Facebook “My baby girl has gone somewhere better. She took her last breath in my arms at 9.39pm x.”

Back in 2013, Kerry told the U.K. Mirror of her daughter, “She had fine blonde hair, blue eyes and (father) Mark and I were besotted with her.  At 10 months she walked for the first time — we were so proud. The only concern was she was so petite and didn’t appear to be growing. But as I’m only 5ft 4ins I tried to tell myself she simply took after me.”

When she was 13 months old, Hayley was still wearing clothing for a 3-month-old, reports the paper. Kerry and Mark (who have two other healthy children, ages 8 and 5) took Hayley to a specialist who discovered through testing that Haley’s skin had an “alarming” lack of elasticity. When Haley was diagnosed with Hutchinson-Gilford progeria syndrome (the full clinical name), her parents vowed to pack her short life with excitement. Their local community raised thousands of dollars for the family to visit Disneyland in California, and Haley went on to travel the world, swimming with dolphins and meeting celebrities such as Prince Charles and Justin Bieber.

Despite her disease, Haley exuded confidence. “The thing is I don’t feel any different inside — I have aches and pains and health problems, but I am still a normal teenager,” she told the U.K. newspaper The Sun.  ”I want to wear lovely clothes, wear makeup and go out with my friends.”

She also told the Mirror in 2011, “I don’t think about dying and just enjoy life. In many ways I feel I’ve been lucky. Because of this I’ve met more people and done more than many do in a lifetime.”

One year prior, Dr. Francis Collins, the director the National Institutes of Health and the scientist who discovered the progeria gene told ABC News, “Kids with progeria occur out of blue. There’s no family history, no warning, no reason to think that this might be getting ready to happen.”

Haley was one of 28 progeria patients from 16 countries who were taking part in a trial for a drug called Lonafarnib. Researchers hoped the drug would slow the aging process by reversing abnormalities in the cells of the body. And in 2012, there was good news: Lonafarnib was proven successful in improving weight, hearing, and bone structure.

Although Hayley would have been able to continually take the drug, she seemed to have no regrets about her journey. “My life with progeria is full of happiness and good memories,” she wrote on her blog. “If I didn’t have progeria I would not have done most of the cool things I have done or met most of the cool people I have met. Deep inside I am no different from anyone. We are all human.”

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