She’s 17, but she died with a 104-year-old’s body; and that’s because she had been battling a rare condition called Hutchinson-Gilford Progeria; a disease which hasten the ageing process 8 times the normal range.
Hayley Okines of Bexhill, East Sussex died from pneumonia complications on Thursday, April 2.
In a Mirror report, Kerry Okines, Hayley’s mother, disclosed the death of the teenager when she posted it on her Facebook account, “My baby girl has gone somewhere better. She took her last breath in my arms 9:39 pm.”
In the same report, it was in September, 1999, when Hayley was diagnosed with the disease and her parents were told she would have a life expentancy of 13 years.
Hayley surpassed the stage and she was even able to write her autobiography at 14 entitled, “Old before my time.”
Her story brought about public awareness and better understanding regarding the disease.
Meanwhile, the Progeria Research Foundation extended their message of sympathy to the family as they posted on their website, “The entire PRF community mourns the loss of one of our shining stars, Hayley Okines. Hayley was one of the first participants in the on-going Progeria clinical trials. Hayley was a pioneer and one of the first treatment for Progeria. Today we remember her tremendous courage and determination.”
Reports say there are 50 individuals known to have this rare disease. Meanwhile according to PRF, 28 progeria stricken children from 16 countries participated on the drug-trial supplied by Merck and Co. The drug-trial has been going on for 2 1/2 years.