Hayley Okines wasn’t supposed to live past age 13. But the incredible teen, who suffered from a rare premature aging condition called progeria, died at age 17 at her home in England.
Hayley’s mom made the sad announcement on her Facebook page last night: “My baby girl has gone somewhere better. She took her last breath in my arms at 9.39pm x.”
Throughout her life, it was easy to see how Hayley continued to push on with courage and determination: Her devoted parents say they were “besotted” by her when she was born and that she continued to amaze them by walking at 10 months and showing impressive signs of intelligence. But progeria, which has been diagnosed in only 74 people in the world, doesn’t affect the mind. Instead, it rapidly ages the body at eight times the normal rate and leaves its sufferers prone to conditions like arthritis, heart conditions and even baldness.
Before she passed away, Hayley was living life with the mind of a 17-year-old girl and the body of a 104-year-old woman.
After months of testing when Hayley was a baby, she was diagnosed with progeria and her devastated parents were given the grim news that she only had 13 years to live. She didn’t waste a single second of her time. Both she and her family took part in numerous fundraising efforts to raise money and awareness for progeria. She was also the subject of several documentaries about her life, including World’s Oldest Teenager: Extraordinary People. And, when most kids her age were worrying about a school dance, Hayley had her mind on her autobiography titled Old Before My Time.
The teen left school last year and traveled to the United States in order to receive a new drug treatment that everyone hoped would improve her condition. But, in recent weeks, she contracted pneumonia and her health worsened.
She was released from the hospital shortly before her death so that she could leave this world in peace in the comfort of her own home.
This is such a sad story and our hearts go out to Hayley’s grieving family. But, at the same time, she was truly an amazing young woman who shared with us her struggle, her pain and her absolutely normal teen life (she totally had a crush on Justin Bieber and even got to meet him). Her wonderful parents made sure they took her around the world before she died and gave her the most fulfilling life a child could possibly have.
And the gifts that she passed on to others — hope and perspective — make us all lucky Hayley shared this universe with us.
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