Rare Diseases

17-year-old girl living in ‘100-year-old body' dies

Photo courtesy Facebook

 (Photo courtesy Facebook)

A British teen who tugged at heart strings internationally after developing a rare disease that caused her body to mimic that of a 100-year-old’s has died at age 17, news.sky.com reported.  

Hayley Okines, of East Sussex, had been diagnosed with Hutchinson-Gilford progeria syndrome, a medical condition that causes those affected to age eight times faster than normal. According to the National Institutes of Health (NIH), the syndrome  occurs in 1 in 4 million newborns worldwide, and only 130 cases have been reported since the condition was first described in 1886. While the condition does not disrupt intellectual development or motor skills, it causes hair loss, aged-looking skin, joint abnormalities and a loss of fat under the skin. Symptoms present during childhood, according to the NIH.

Okines used her diagnosis to raise awareness and funds for the disease. At age 14, she published an autobiography “Old Before My Time,” which details her experience with progeria syndrome, news.sky.com reported.

Since her death, Okines has received an outpouring of support on Facebook. After her mother, Kerry, announced her death on the girl’s Facebook page Thursday, the Progeria Foundation posted a tribute on their own page, writing: "The entire Progeria family mourns together with many as we say goodbye to Hayley Okines, our smart, beautiful and spirited English rose, who passed away today at age 17.”

“Gone from our sight but never our memories, gone from our touch but never our hearts. We will miss you."

According to the NIH, progeria syndrome is an autosomal dominant condition, which means one copy of the altered gene in each cell can be enough to cause the condition. It results from new mutations in the LMNA genes, and it almost always presents in people who do not have a family history of the disorder.

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