Hayley Okines

Last updated

Hayley Okines
Hayley Okines.jpg
Born
Hayley Leanne Okines

(1997-12-03)3 December 1997 [1]
Died2 April 2015(2015-04-02) (aged 17)
Cause of death Progeria
NationalityEnglish
OccupationAuthor
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. [3] [4] 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. [5]

Progeria Human disease

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 Statistical measure of how long a person or organism may live, based on factors of their life

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.

Contents

Okines was diagnosed with progeria at the age of two, [6] and doctors put her projected lifespan at thirteen years. [7] She frequently travelled to Boston in the United States to receive new treatments. In 2012, her autobiography, titled Old Before My Time, was published; [8] [9] it was co-authored by Okines, her mother Kerry, and contributor Alison Stokes.

Boston Capital city of Massachusetts, United States

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.

Television appearances

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. [10] In the UK, a television documentary titled Extraordinary Lives also discussed Okines, her condition, and her options.

Discovery Health Channel

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 . [11] The episode concerned Okines' trips to Boston for treatment. [3]

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.

Telomere nucleotide sequences

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 . [12]

Tara Brown is an Australian television presenter and reporter. She was born in Sydney, New South Wales, Australia.

<i>60 Minutes</i> (Australian TV program) an Australian version of the U.S. television newsmagazine show 60 Minutes

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.

Books

Old Before My Time is Okines' first and only book that chronicled her early life and struggle with progeria. [8] [9] 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. [13]

Fundraisers

Although the United States' Progeria Research funded Okines's treatment, her family had to fund the air fare. [11] 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 1,000 miles (1,600 km) to support her. [14]

In December 2010, Okines met Justin Bieber after a group of people started an awareness campaign on Twitter. [15] [16]

"Voices of Tomorrow"

When Jane Winiberg saw a progeria television special, she and Mark Street wrote a song about Okines and other children. [17] The Kids Choir 2000, which includes Okines, [18] performed the vocals on the song, titled "Voices of Tomorrow". [19] "Life Will Find a Way" is another similar track on the album, and the profits are being donated to the Progeria Research Foundation. [18]

See also

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References

  1. Kerry Okines, Mark Okines (2013). "Frequently Asked Questions". Hayley Okines - My Life With Progeria.Missing or empty |url= (help); |access-date= requires |url= (help)
  2. 1 2 "Hayley Okines: Girl who was born with, and strove to raise awareness of, the premature-aging condition progeria". The Independent . Retrieved 3 January 2015.
  3. 1 2 "Inspiring People: Hayley Okines". Learning for Life. Archived from the original on 24 December 2012. Retrieved 18 October 2009.
  4. Miller, Tracy (16 April 2014). "Rare genetic disease causes rapid aging in children – but new treatments offer hope". Daily News. New York. Retrieved 7 May 2014.
  5. Larimer, Sarah (3 April 2015). "Hayley Okines, a teen trapped in a 104-year-old's body, dies at 17". Washington Post. Retrieved 3 April 2015.
  6. "What Is Progeria?". CheckOrphan. MediLexicon International Ltd. 13 May 2009. Archived from the original on 29 July 2012. Retrieved 18 October 2009.
  7. "Nieuwe docureeks 'Against All Odds' volgt bijzondere en inspirerende mensen". TV-Visie (in Dutch). 5 October 2009. Retrieved 18 October 2009.
  8. 1 2 Okines, Hayley; Okines, Kerry; Stokes, Alison (2011). Old Before My Time: Hayley Okines' Life with Progeria. Accent Press Ltd. ISBN   9781908192554.
  9. 1 2 Allen, Jane (8 March 2012). "Progeria Book: 'Old Before My Time'". ABC News. Retrieved 6 October 2015.
  10. "Extreme Aging: Hayley's Story". Amazing Families. Discovery Health. Archived from the original on 7 March 2009. Retrieved 18 October 2009.
  11. 1 2 Lynda Turner (16 February 2008). "Hayley Okines' battle With Progeria to be shown on Channel Five Documentary". Mid Sussex Times. Retrieved 18 October 2009.
  12. Okines, Hayley (18 March 2015). Young at Heart. UK: Accent Press Ltd. p. 208. ISBN   9781783753260 . Retrieved 6 October 2015.
  13. "The Progeria Research Foundation Newsletter, December 2005" (PDF). The Progeria Research Foundation. December 2005. Retrieved 18 October 2009.
  14. McCatee, Rebecca (3 April 2015). "Hayley Okines Dies at 17; Progeria Campaigner Charmed Prince Charles, Justin Bieber and More". E!. Retrieved 5 April 2015.
  15. Pocklington, Rebecca (4 April 2015). "Hayley Okines: Justin Bieber pays tribute to brave teen after meeting her following huge social media campaign". The Mirror. Retrieved 5 April 2015.
  16. "Shop in our Store". The Progeria Research Foundation. Retrieved 18 October 2009.
  17. 1 2 "2006: Voices of Tomorrow Now Available". The Progeria Research Foundation. 2006. Archived from the original on 23 April 2009. Retrieved 18 October 2009.
  18. "The Kids Choir 2000". Amazon.com. Retrieved 18 October 2009.