1997 - 2015 (Age 17)
LONDON (AP) — A campaigner who raised awareness of the rare genetic condition progeria, which causes those affected to age about eight times faster than average, has died at age 17.
The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday at her home. It didn't provide more details.
The group's executive director Audrey Gordon praised Okines for her participation in drug trials and research that helped make progress toward treatment for the condition. Hundreds of tributes also poured into the group's website celebrating Okines' life.
Okines published her autobiography, "Old Before My Time," at 14, detailing her unusual life.
The Progeria Research Foundation says the condition affects about 1 in 4 million to 8 million newborns. Those affected die at an average age of 14.
Copyright © 2015 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
I just watched Hayley's story on FB, what a wonderful young lady she was. Sorry to lose someone some special in this world. Only the good die young! n
Elaine Lovely Joycy Schmidt
February 15, 2024 | Leavenworth, KS
The humankind has been made better because of Hayley Okines - what an amazing pioneer of a young woman!
Peace to the family and friends that have loved, and will always, love her.
Mary
July 28, 2021 | ME | Brother
You seemed like a beautiful young woman and i am so glad people got to hear your story and understand your illness better. R.I.P Hayley may you forever stay in our hearts.
Kymora
May 20, 2021 | Fayetteville, NC
May God bless you and your family in this time of sorrow.
Timothy
April 09, 2020
The internet is amazing in the way of a simple short clip of your life lead me not only to here but to full blown researching more about progeria. Im glad you spoke out the way you did and truly put a face to such a rare condition. Hopefully your bravery in the way of that and also in the way of opening your body and self up to medical treatments paves the way for future progeria patients. RIP hayley. Thank you to you and your family for what you have done.
Stacy Lorton
August 26, 2019 | Palm Springs, CA | Acquaintance
I wish I could have known you- the woman that you were... I wish I could tell you, (in person) how Funny; Sweet; Beautiful; Amazing; and Brave I think you were... You make me want to better Myself, and not just For myself, but for those Around me... Be ever watchful over those you love, sweet girl, until you all meet again- all my best to your family...
A Miller
June 29, 2019 | Walla Walla, WA
RIH TO A BEAUTIFUL ANGEL
Valenda Newell
November 30, 2016 | Indianapolis, IN
Live long in our hearts
November 20, 2016
Hayley, you are truly an angel, the time God has given you here on earth with us made me really appreciate the simplest things in life, your videos inspire me, your smile and braveness is contagious and awesome. I hope to see you in the next life and then, I would fight to be your best friend, since I could not see you here. I love you and miss you, words cannot express....PS Caroline
caroline rampersad
April 14, 2016 | Hyattsville, MD