Hayley Okines died Thursday at age 17. (Photo: Screengrab from Twitter) 
 
 Hayley Okines, an English teen with a rare genetic disease that caused premature aging, died Thursday at age 17. 
 
 "My baby girl has gone somewhere better. She took her last breath in my arms at 9.39 pm," Hayley's mother, Kerry Okines, wrote on her Facebook page. 
 
 Hayley had Hutchinson-Gilford Progeria Syndrome, a disease that causes people to age eight times faster than the average person. She was outspoken about her disease and raised awareness with her autobiography, Old Before My Time. 
 
 "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," the Progeria Research Foundation wrote on Facebook. They also posted a photo of Hayley with her mother. 
 
 Facebook Timeline Photos - Progeria Research Foundation | Facebook 
 
 Okines had been in the hospital for pneumonia shortly before her death, the BBC reported. Doctors initially did not expect she would live beyond age 13, according to the report. 
 
 Follow @lagrisham on Twitter 
 
 Read or Share this story: http://usat.ly/1FpFYTG 

 Image copyright BBC news grab Image caption Hayley Okines and her family had campaigned to raise awareness of her condition 
 
 A girl with a rare genetic condition which made her body age eight times faster than normal has died at the age of 17. 
 
 Hayley Okines, from Bexhill, East Sussex, became known as the 100-year-old teenager through her efforts to raise awareness of progeria. 
 
 Her mother, Kerry, announced Hayley's death on Thursday evening. 
 
 "My baby has gone somewhere better. She took her last breath in my arms at 9.39pm," she wrote. 
 
 Her father Mark said Hayley was being treated for pneumonia, and had briefly returned home from hospital on the day she died. 
 
 "She came home for an hour and she saw her puppies, little brother Louie and her sister Ruby," he said. 
 
 "I think she wanted to come home to say goodbye to everybody. 
 
 "I think she knew that yesterday was going to be the time." 
 
 'Memory lives on' 
 
 Hayley, who published an autobiography at the age of 14, had made a number of appearances where she spoke about her condition. 
 
 The teenager had been told she would not live past the age of 13, but she went on to undergo a pioneering drug treatment in the US. 
 
 Image copyright BBC news grab Image caption Hayley became known as the "100-year-old teenager" 
 
 Hutchinson-Gilford Progeria Syndrome causes accelerated ageing in those affected. 
 
 People with the condition also suffer heart problems, lack of growth and loss of body fat and hair. 
 
 It affects just 124 children worldwide. 
 
 The Progeria Research Foundation posted on its Facebook page: "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." 
 
 Phoebe Smith, whose 11-year-old daughter Ashanti also has the condition, said Hayley had inspired a lot of people. 
 
 "She will always be loved. She is my inspiration - her and her mum," she said. 
 
 "Her memory will definitely live on." 

 Format: Paperback 
 
 I read this in an ebook format, I can say it does have a few typos that are probably attributed to that transfer and are easy to over look. It is also pretty easy to figure out the few differences in what an item is called since the family is from the UK and I am reading it in the USA. 
 
 
 
 The first problem while reading I had is that the timeline jumps around quite a bit and I was constantly trying to figure out where I was at in relation to either a year or Hayley's age. I understand that with everything going on writing a journal and keeping track of all the dates of when things happened wouldn't have been at the top of the priority list. The book reads more like it is written and kept in a format of what came to mind to write about that night without going back and trying to put each event of their lives together in the same place and in a strict timeline as she grows up format. 
 
 
 
 My second, and bigger, problem with the book was the blatant plug for donations in the last few pages. After spending most of the book talking about all the opportunities to take trips, go to theme parks, meet famous people and give Hayley expensive physical items, the comment is made that the family still struggles with the day to day expenses of life. I realize that most of those things and opportunities are due to generous donations. I don't know how Hayley's donation fund it set up or if it is written that it cannot be used for life expenses, but it is a bit off putting, at least to me, to go on and on about all those things and then ask for more. There are so many kids that struggle and more yet that have medical problems that add to those struggles. 
 
 
 
 I commend this family for opening up their lives and raising awareness for this disease. I don't want this to read as a negative review about them personally, just two items that I take issue with about the book. 

 Hayley Okines, who became known as the “100-year-old teenager” because of a rare genetic condition that made her age at eight times the normal rate, died Thursday in England. She was 17. 
 
 Her mother, Kerry, announced her death in a Facebook post. 
 
 “My baby has gone somewhere better. She took her last breath in my arms at 9:39 p.m.,” Kerry wrote. 
 
 Hayley, from Bexhill in East Sussex, had recently been treated in the hospital for pneumonia but had returned home on the day she died, the BBC reports. 
 
 In her 2012 autobiography, Old Before My Time, Hayley described what it was like living with Hutchinson-Gilford progeria syndrome, which causes accelerated aging. 
 
 “The easiest way to explain it is it’s like my body is 100 years old when I am actually 14. But I don’t like it when people call me old, because I don’t feel like I am 100 years old,” she wrote. 
 
 At the time, she said she wasn’t worried about dying. “They said the Titanic wouldn’t sink but it did, so that proves experts can be wrong and I want to prove the doctors wrong,” she wrote. 
 
 Indeed, she lived years longer than many doctors expected after undergoing pioneering drug treatments in the U.S. 
 
 “Sometimes people ask me if I could have three wishes, would I wish I didn’t have progeria? And I say no,” Hayley wrote. “My life with progeria is full of happiness and good memories. Deep inside I am no different from anyone. We are all human.” 
 
 Hayley Okines Chris Young/PA 
 
 The Progeria Research Foundation posted a tribute to Hayley on its Facebook page. 
 
 “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,” the post reads. “Gone from our sight, but never our memories, gone from our touch but never our hearts We will miss you.” 
 
 RELATED: Sam Berns, Remarkable 17-Year-Old with Rare Aging Disease, Dies 

 Hutchinson-Gilford progeria syndrome is a genetic condition characterized by the dramatic, rapid appearance of aging beginning in childhood. Affected children typically look normal at birth and in early infancy, but then grow more slowly than other children and do not gain weight at the expected rate (failure to thrive). They develop a characteristic facial appearance including , a thin nose with a beaked tip, thin lips, a , and . Hutchinson-Gilford progeria syndrome also causes hair loss (alopecia), aged-looking skin, joint abnormalities, and a loss of fat under the skin (subcutaneous fat). This condition does not affect intellectual development or the development of motor skills such as sitting, standing, and walking. 
 
 People with Hutchinson-Gilford progeria syndrome experience severe hardening of the arteries ( ) beginning in childhood. This condition greatly increases the chances of having a heart attack or stroke at a young age. These serious complications can worsen over time and are life-threatening for affected individuals. 

 My baby girl has gone somewhere better. She took her last breath in my arms at 9.39pm x 

 Home About PRF » Quick Facts 
 
 Quick Facts 
 
 MISSION: To Discover Treatments and the Cure for Hutchinson-Gilford Progeria Syndrome and its Aging-related Disorders, Including Heart Disease 
 
 PRF BY THE NUMBERS as of October 1, 2016 Identified children living with Progeria: 140* in 45 countries 
 
 PRF-sponsored Progeria Clinical Drug Trials: 3 
 
 Grants funded:64, totaling $6.9 million 
 
 Cell lines in the PRF Cell & Tissue Bank: 204 
 
 Children in PRF’s Medical & Research Database: 152 
 
 International Scientific Meetings on Progeria: 11 
 
 Number of languages into which PRF’s program and medical care materials are translated: 37 
 
 Increase in scientific publications since the Progeria gene discovery: 2,200% 
 
 
 
 *Includes 33 children in the Progeroid Laminopathy category who have a mutation in the Lamin pathway, but do not produce progerin. 
 
 What is Progeria? 
 
 Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS), is a rare, fatal genetic condition of accelerated aging in children. Children with Progeria die of the same heart disease that affects millions of normally aging adults (arteriosclerosis), but at an average age of just 14 years. Remarkably, their intellect is unaffected, and despite significant physical changes in their young bodies, these extraordinary children are intelligent, courageous, and full of life. 
 
 About PRF 
 
 The Progeria Research Foundation (PRF) was established in 1999 by Drs. Leslie Gordon and Scott Berns, the parents of a child with Progeria, along with many dedicated friends and family who saw the need for a medical research resource for the doctors, patients, and families of those with Progeria. Since that time, PRF has been the driving force behind the Progeria gene discovery and the first-ever Progeria drug treatment. PRF has developed programs and services to aid those affected by Progeria and the scientists who conduct Progeria research. Today, PRF is the only non-profit organization solely dedicated to finding treatments and the cure for Progeria. PRF is hailed as a prime example of a successful translational research organization, moving from creation, to gene discovery, to first-ever drug treatment in just 13 years. 
 
 Total Dollars Raised 1999 through October 1, 2016: $23,107,419 More than 80% of PRF’s annual expenses are consistently dedicated to its programs and services - one factor in our achieving a coveted 4-star rating from Charity Navigator. The support we have received made the Progeria gene discovery, the Progeria clinical trials and all of our other extraordinary progress possible. With the help of current and new supporters, we will win this race against time and find treatments and the cure for these special children. Moreover, Progeria treatment discoveries may also help millions with heart disease and the entire aging population. 
 
 PRF’S PROGRAMS & SERVICES 
 
 First-Ever Progeria Clinical Drug Trials and Treatment: PRF-Sponsored Clinical Drug Trials bring children from around the world for promising treatments that may help to improve disease and extend the lives of children with Progeria. In 2012, history was made with the discovery that lonafarnib, a farnesyltransferase inhibitor, or FTI, is the first-ever treatment for Progeria, improving many aspects of the disease including the vital vascular system . More recent studies conclude that lonafarnib extends estimated lifespan. In 2016, PRF initiated a two-drug trial, adding Everolimus, with the hope that the two drugs together will be even more effective than lonafarnib alone. These are remarkable steps forward in the pursuit of a cure. 
 
 International Progeria Registry maintains centralized information on children and families living with Progeria. This assures rapid distribution of any new information that may benefit the children. 
 
 Cell & Tissue Bank: PRF’s Bank provides researchers with genetic and biological material from Progeria patients and their families so research on Progeria and other aging-related diseases can be performed to bring us closer to the cure. PRF has collected an impressive 204 cell lines from affected children worldwide (ages 2 months to 17 years) including 10 Induced Pluripotent Stem Cell (iPSC) lines. 
 
 Medical & Research Database: The Database is a centralized collection of medical information from Progeria patients worldwide. The data is rigorously analyzed to help us understand more about Progeria and devise treatment recommendations. In 2010, this analysis contributed to PRF’s comprehensive healthcare Handbook on Progeria aimed at optimizing quality of life. The Handbook is available in English, Spanish and Portuguese, Russian & Italian. 
 
 Diagnostic Testing: This program was developed in the wake of the 2003 gene discovery so that children, their families and medical caretakers can get a definitive, scientific diagnosis. This can translate into earlier diagnosis, fewer misdiagnoses and early medical intervention to ensure a better quality of life for the children. 
 
 Scientific Workshops on Progeria: PRF has organized 11 scientific conferences that have brought together scientists and clinicians from all over the world to share their expertise and cutting edge scientific data. These workshops foster collaboration in the fight against this devastating disease. The most recent meeting was May 2-4, 2016 in Boston, MA. 
 
 Research Grants: Through peer review by our volunteer Medical Research Committee, PRF has funded projects throughout the world that have led to important discoveries about Progeria, heart disease and aging. Awards of up to $100,000 per year, for up to three years, have allowed innovative new research in Progeria to thrive. 
 
 Publications and Research: Both clinical and basic scientists have utilized the PRF grants, cells and tissues, and database; their discoveries are published in top-notch scientific journals. The average annual number of scientific publications on Progeria since 2002 is more than 20 times that of the previous 50 years! 
 
 PRF Translation Program: In touch with the world . With a prominent global presence, PRF eliminates barriers to communication for patients and their families, from around the world. This initiative has succeeded in translating PRF program and medical care materials into 37 languages. 
 
 
 
 
 
 . With a prominent global presence, PRF eliminates barriers to communication for patients and their families, from around the world. This initiative has succeeded in translating PRF program and medical care materials into 37 languages. Public Awareness: progeriaresearch.org provides access to the latest information on Progeria research and support for families. Through Facebook, Twitter and other mediums, PRF’s direct social media reach is over 1 million. PRF’s story has appeared on CNN, ABC News, Primetime, Dateline, The Katie Couric Show, and The Today Show, in Time and People magazines, The New York Times, The Wall Street Journal and many other widely-read media outlets. In addition, the award-winning 2013 HBO film Life According to Sam has raised awareness in a unique and inspiring way. PRF also manages Find the Other 150, a global awareness campaign to find children with Progeria worldwide, so they can get the unique help they need. 

 See more of Progeria Research Foundation on Facebook
– "Sometimes people ask me if I could have three wishes, would I wish I didn't have progeria? And I say no." So said UK teen Hayley Okines in her 2012 autobiography Old Before My Time, telling readers her life with the rare premature-aging disease was "full of happiness and good memories," per People. That joy-filled life has sadly come to an end, Okines' mom announced last night on Facebook. "My baby girl has gone somewhere better. She took her last breath in my arms at 9.39pm x," Kerry Okines wrote. Her post was joined by one from the Progeria Research Foundation, which said a few hours later, "The entire Progeria family mourns together with many as we say goodbye to Hayley Okines, our smart, beautiful, and spirited English Rose." Hayley, 17, had just come home from the hospital earlier yesterday after a bout with pneumonia, the BBC reports; her father says, "I think she wanted to come home to say goodbye." The extremely uncommon genetic disorder, which affects only 125 children worldwide, caused Hayley to age eight times faster than normal, USA Today notes. Symptoms often include hair loss, inability to gain weight, and features that resemble those of an elderly person, including older-looking skin, per the NIH. Hayley, often referred to as the "100-year-old teen" in the UK press, surpassed doctors' expectations she wouldn't live past age 13, the BBC notes, and she became an active participant in raising awareness for the disease. She went through a groundbreaking drug trial in the US, wrote her memoir at age 14, and continued to make appearances to inspire others, the broadcaster adds. "Deep inside I am no different from anyone. We are all human," she wrote in her book, per People. (Read the story of Sam Berns, who also bravely fought the disease before he died last year.)