Hayley Leanne Okines
3 December 1997
Arrington, Cambridgeshire, England
|Died||2 April 2015 17) (aged|
|Cause of death||Progeria|
|Known for||Progeria activism|
Hayley Leanne Okines (3 December 1997 – 2 April 2015) was an English author and activist who was a sufferer of the extremely rare aging disease progeria. She was known for spreading awareness of the condition. Although the average life expectancy for sufferers is 13 years, Okines was part of a drug trial that had seen her surpass doctors' predictions of her projected lifespan. She died on 2 April 2015 at the age of 17, having lived four years beyond doctors' initial predictions.
Progeria is an extremely rare autosomal dominant genetic disorder in which symptoms resembling aspects of aging are manifested at a very early age. Progeria is one of several progeroid syndromes. Those born with progeria typically live to their mid-teens to early twenties. It is a genetic condition that occurs as a new mutation, and is rarely inherited, as carriers usually do not live to reproduce children. Although the term progeria applies strictly speaking to all diseases characterized by premature aging symptoms, and is often used as such, it is often applied specifically in reference to Hutchinson–Gilford progeria syndrome (HGPS).
Life expectancy is a statistical measure of the average time an organism is expected to live, based on the year of its birth, its current age and other demographic factors including gender. The most commonly used measure of life expectancy is at birth (LEB), which can be defined in two ways. Cohort LEB is the mean length of life of an actual birth cohort and can be computed only for cohorts born many decades ago, so that all their members have died. Period LEB is the mean length of life of a hypothetical cohort assumed to be exposed, from birth through death, to the mortality rates observed at a given year.
Okines was diagnosed with progeria at the age of two,and doctors put her projected lifespan at thirteen years. She frequently travelled to Boston in the United States to receive new treatments. In 2012, her autobiography, titled Old Before My Time, was published; it was co-authored by Okines, her mother Kerry, and contributor Alison Stokes.
Boston is the capital and most populous city of the Commonwealth of Massachusetts in the United States. The city proper covers 48 square miles (124 km2) with an estimated population of 694,583 in 2018, making it also the most populous city in New England. Boston is the seat of Suffolk County as well, although the county government was disbanded on July 1, 1999. The city is the economic and cultural anchor of a substantially larger metropolitan area known as Greater Boston, a metropolitan statistical area (MSA) home to a census-estimated 4.8 million people in 2016 and ranking as the tenth-largest such area in the country. As a combined statistical area (CSA), this wider commuting region is home to some 8.2 million people, making it the sixth most populous in the United States.
Okines was the subject of television specials in both Europe and the United States. Discovery Health aired a special titled Extreme Aging: Hayley's Story, which focused on the balance of the disease being currently terminal but with a possible cure on the horizon.In the UK, a television documentary titled Extraordinary Lives also discussed Okines, her condition, and her options.
Discovery Health Channel was a U.S. cable television specialty channel. Launched in July 1998, it was owned by Discovery Communications as a spin-off of Discovery Channel, focusing on health and wellness-oriented programming.
When she was 13 years old, she was featured on a French television show on 20 January 2012 called Tous Différents ("All Different", NT1). At that time she already had a physical age of 102 years.
When she was ten years old, Okines was featured in "Hope for Hayley", an episode of the British series Extraordinary People .The episode concerned Okines' trips to Boston for treatment.
Extraordinary People is a television documentary series broadcast on Channel 5 in the United Kingdom. Each programme follows the lives of people with a rare medical condition and/or unusual ability. People featured have or had rare illnesses such as rabies and eye cancer. Many of these people do activities previously thought impossible for people in their condition.
She was featured in the second part of a three-part documentary series called Make Me Live Forever, in which presenter Michael Mosley investigated a number of proposed treatments to enable humans to extend their lifespan. Okines was discussed in relation to telomeres (short telomeres are a characteristic of progeria) and their apparent role in the ageing process.
A telomere is a region of repetitive nucleotide sequences at each end of a chromosome, which protects the end of the chromosome from deterioration or from fusion with neighboring chromosomes. Its name is derived from the Greek nouns telos (τέλος) "end" and merοs "part". For vertebrates, the sequence of nucleotides in telomeres is AGGGTT, with the complementary DNA strand being TCCCAA, with a single-stranded TTAGGG overhang. This sequence of TTAGGG is repeated approximately 2,500 times in humans. In humans, average telomere length declines from about 11 kilobases at birth to fewer than 4 kilobases in old age, with the average rate of decline being greater in men than in women.
She was also featured in a report by Tara Brown on the Australian version of 60 Minutes .
Tara Brown is an Australian television presenter and reporter. She was born in Sydney, New South Wales, Australia.
60 Minutes is an Australian version of the U.S. television newsmagazine show 60 Minutes airing on Sunday nights on the Nine Network. A New Zealand version uses segments of the show.
Old Before My Time is Okines' first and only book that chronicled her early life and struggle with progeria.Her follow-up book Young At Heart followed her years as a teenager with progeria, notably with teenage-like interests and her struggle with paralysis.
Although the United States' Progeria Research funded Okines's treatment, her family had to fund the air fare. 1,000 miles (1,600 km) to support her.Some athletes were inspired by Okines to raise money for progeria research. London's Chelsea Football Club raised thousands of pounds through a charity raffle in Okines's honour. Additionally, after Steve Keen saw Okines on a television special, he bicycled
In December 2010, Okines met Justin Bieber after a group of people started an awareness campaign on Twitter.
When Jane Winiberg saw a progeria television special, she and Mark Street wrote a song about Okines and other children.The Kids Choir 2000, which includes Okines, performed the vocals on the song, titled "Voices of Tomorrow". "Life Will Find a Way" is another similar track on the album, and the profits are being donated to the Progeria Research Foundation.
Hayley Dee Westenra is a New Zealand singer, classical crossover artist, songwriter, and UNICEF Ambassador. Her first internationally released album, Pure, reached No. 1 on the UK classical charts in 2003 and has sold more than two million copies worldwide. Pure is the fastest-selling international début classical album to date, having made Westenra an international star at age 16. In August 2006, she joined the Irish group Celtic Woman, was featured on their Celtic Woman: A New Journey CD and DVD, toured with them on their 2007 Spring Tour, and was also featured on their DVD, The Greatest Journey: Essential Collection, released in 2008. Westenra has produced five New Zealand number one studio albums, holding the title for the most number one records for any New Zealand act, a record shared with alternative rock band Shihad since the release of their 2014 album, FVEY.
Werner syndrome (WS), also known as "adult progeria", is a rare, autosomal recessive disorder which is characterized by the appearance of premature aging.
Teresa Heinz, also known as Teresa Heinz Kerry, is a Portuguese-American businesswoman and philanthropist. Heinz is the widow of former U.S. Senator John Heinz and the wife of former U.S. Secretary of State, longtime U.S. Senator, and 2004 Democratic presidential nominee John Kerry. Heinz is Chair of the Heinz Endowments and the Heinz Family Philanthropies.
Elizabeth Helen Blackburn, is an Australian-American Nobel laureate who is the former President of the Salk Institute for Biological Studies. Previously she was a biological researcher at the University of California, San Francisco, who studied the telomere, a structure at the end of chromosomes that protects the chromosome. In 1984, Blackburn co-discovered telomerase, the enzyme that replenishes the telomere, with Carol W. Greider. For this work, she was awarded the 2009 Nobel Prize in Physiology or Medicine, sharing it with Greider and Jack W. Szostak, becoming the only Tasmanian-born Nobel laureate. She also worked in medical ethics, and was controversially dismissed from the Bush Administration's President's Council on Bioethics.
Julie Claire Hesmondhalgh is an English actress, known for her role as Hayley Cropper in the ITV soap opera Coronation Street between 1998 and 2014. For this role, she won Best Serial Drama Performance at the 2014 National Television Awards and Best Actress at the 2014 British Soap Awards.
Padma Parvati Lakshmi Vaidynathan, known professionally as Padma Lakshmi is an American author, actress, model, television host, and executive producer. Her debut cookbook Easy Exotic won her the "Best First Book" award at the 1999 Gourmand World Cookbook Awards. She has been the host of the US cooking competition program Top Chef since season two in 2006 for which she received an Emmy nomination in 2009 for Outstanding Reality Host. Her debut memoir Love, Loss and What We Ate was released on International Women's Day, March 8, 2016.
Biological immortality is a state in which the rate of mortality from senescence is stable or decreasing, thus decoupling it from chronological age. Various unicellular and multicellular species, including some vertebrates, achieve this state either throughout their existence or after living long enough. A biologically immortal living being can still die from means other than senescence, such as through injury, disease, or lack of available resources.
Kerry Marisa Washington is an American actress. She gained wide public recognition for starring as Olivia Pope, a crisis management expert, in the ABC drama series Scandal (2012–2018). For her role, she received nominations for two Primetime Emmy Award for Outstanding Lead Actress and a Golden Globe Award for Best Actress. Her portrayal of Anita Hill in the HBO television film Confirmation, earned her another Primetime Emmy Award nomination.
Paramore is an American rock band from Franklin, Tennessee, formed in 2004. The band currently consists of lead vocalist Hayley Williams, guitarist Taylor York and drummer Zac Farro. Williams and Farro are founding members of the group, while York, a high school friend of the original lineup, joined in 2007. Williams is the only member listed on the band's recording contract with Warner Music Group's Fueled by Ramen sublabel and the only member to appear on all five of Paramore's studio albums.
Selena Marie Gomez is an American singer, actress and producer. After appearing on the children's television series Barney & Friends as a child, she received wider recognition for her portrayal of Alex Russo on the Disney Channel television series Wizards of Waverly Place, which aired for four seasons from 2007 until 2012. Gomez has also starred in the films Another Cinderella Story (2008), Princess Protection Program (2009), Wizards of Waverly Place: The Movie (2009), Ramona and Beezus (2010), Monte Carlo (2011), Spring Breakers (2012), Getaway (2013) and The Fundamentals of Caring (2016). She voices the character of Mavis in the Hotel Transylvania film franchise, and serves as an executive producer of the Netflix television series 13 Reasons Why.
Carolyn Widney "Carol" Greider is an American molecular biologist and Nobel laureate. She is a Bloomberg Distinguished Professor, Daniel Nathans Professor, and Director of Molecular Biology and Genetics at Johns Hopkins University. She discovered the enzyme telomerase in 1984, while she was a graduate student of Elizabeth Blackburn at the University of California, Berkeley. Greider pioneered research on the structure of telomeres, the ends of the chromosomes. She was awarded the 2009 Nobel Prize for Physiology or Medicine, along with Blackburn and Jack W. Szostak, for their discovery that telomeres are protected from progressive shortening by the enzyme telomerase.
Brooke Megan Greenberg was an American who remained physically and cognitively similar to a toddler, despite her increasing age. She was about 30 in (76 cm) tall, weighed about 16 lb (7.3 kg) and had an estimated mental age of nine months to one year. Brooke's doctors termed her condition Syndrome X.
Hayley Kiyoko Alcroft is an American singer, songwriter, and actress. Beginning dance lessons as a child, Kiyoko's interest in entertaining led to her working as a child model and actress. She appeared in a variety of films including Scooby-Doo! film series (2009–10), Lemonade Mouth (2011), Blue Lagoon: The Awakening (2012), Jem and the Holograms (2015), and XOXO (2016). Alongside her film roles, she also held a recurring role in the TV series The Fosters (2014) and a lead role on CSI: Cyber (2015–16) and Five Points (2018).
Patricia Elizabeth "Pattie" Mallette is a Canadian author, film producer, and mother of Justin Bieber. She also managed her son's early career. Her autobiography, Nowhere but Up, was published in 2012 by Christian book publisher Revell, and was #17 on the New York Times Best Seller list during its first week of release.
Elizabeth Anne Velásquez is an American motivational speaker, activist, author, and YouTuber. She was born with an extremely rare congenital disease called Marfanoid–progeroid–lipodystrophy syndrome that, among other symptoms, prevents her from accumulating body fat and gaining weight. Her conditions resulted in bullying during her childhood. During her teenage years, she faced cyber bullying, which ultimately inspired her to take up motivational speaking.
The Progeria Research Foundation (PRF) is a non-profit organization dedicated to developing treatments and, ultimately, a cure for progeria, a congenital disorder. The Foundation was established in 1999 by the family and friends of Sam Berns, a child with progeria, including Dr. Leslie Gordon and Dr. Scott Berns, his parents, and Audrey Gordon, his aunt.
Sampson Gordon "Sam" Berns was an American activist who had progeria and helped raise awareness about the disease. He was the subject of the HBO documentary Life According to Sam, which was first screened in January 2013. He died one year later, after appearing in a TEDx Talks video titled "My philosophy for a happy life."
Life According to Sam is an HBO original documentary film directed by Sean Fine and Andrea Nix Fine. Premiering in January 2013 at the Sundance Film Festival, the documentary discloses the impact that progeria had on the lives of Sam Berns and his parents, Dr. Leslie Gordon and Dr. Scott Berns. It was broadcasted on HBO in October of 2013, and since then it has won a 2013 Peabody Award and an Emmy Award for Exceptional Merit in Documentary Filmmaking. It was also one of the 15 titles considered for nomination in the Documentary Feature category for the 86th Oscars.