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Hayley Okines
Hayley Okines
Hayley Okines
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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 life expectancy for those with the condition 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]

Key Information

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.

Television appearances

[edit]

Okines was the subject of television specials in both Europe and North America. 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.

When she was 13 years old, she was featured on a French television show on 20 January 2012 called Tous Différents ("All Different", NT1).[citation needed]

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]

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.[citation needed]

She was also featured in a report by Tara Brown on the Australian version of 60 Minutes.[12]

Books

[edit]

Okines' first book, Old Before My Time, 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 her teenage interests and her struggle with paralysis.[13]

Fundraisers

[edit]

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"

[edit]

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 included 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

[edit]

References

[edit]
[edit]
Revisions and contributorsEdit on WikipediaRead on Wikipedia

Hayley Okines

View on Grokipedia
from Grokipedia
Hayley Okines (1997–2015) was a British author and activist who lived with Hutchinson–Gilford progeria syndrome, a rare that accelerates aging in children, causing them to age up to eight times faster than normal. Born in Arrington, , she was diagnosed at around 21 months old and given a of not surviving past age 13, yet she exceeded this by four years through pioneering drug treatments in the United States. Okines became known as the "100-year-old teenager" for her outward appearance and health challenges, including heart problems, loss of body fat and hair, and , while maintaining an optimistic outlook and pursuing typical teenage interests like meeting celebrities and dreaming of a career in beauty. Okines raised global awareness of , which affects roughly 1 in 4–8 million children worldwide, through media appearances, documentaries such as Channel 5's Extraordinary People, and campaigns with her family to fund research via organizations like the Progeria Research Foundation. She co-authored her first , Old Before My Time: Hayley Okines' Life with Progeria, at age 13 or 14, detailing her daily struggles and joys, followed by a second book, Young at Heart, focusing on her teenage years. Her participation in clinical trials contributed to the development of the first FDA-approved treatment for progeria, , highlighting her role in advancing medical progress for the condition. Okines died on 2 April 2015 at age 17 from , surrounded by family in Bexhill, where she took her final breath in her mother's arms. Her legacy endures through her writings, which inspired others with the disorder, and her family's continued advocacy, including a posthumous , A Life to Celebrate, that reflects on her resilience and positive spirit.

Early life and diagnosis

Birth and family background

Hayley Leanne Okines was born on 3 December 1997 in Arrington, a small rural village in , . She was the third child of parents Kerry Okines, who worked in a school kitchen, and Mark Okines; her older sisters were Stacey and Charlotte. The family faced financial challenges typical of a working-class , including an unplanned that strained resources, though community support helped during this period. In her early childhood, Hayley experienced typical developmental milestones for the first two years, growing up in the close-knit environment of their modest home in Arrington before the family later relocated to in . This rural setting fostered a supportive family dynamic, with Kerry and Mark providing a stable foundation amid everyday routines.

Medical diagnosis

Hayley Okines was diagnosed with Hutchinson-Gilford Progeria Syndrome (HGPS) at approximately 21 months of age in September 1999. The diagnosis came after her referred her to specialists due to concerns over her , including minimal weight gain despite normal feeding. At in London, medical evaluations identified early symptoms such as , unusually aged-looking skin, and reduced skin elasticity confirmed via . Further revealed a in the LMNA , which produces an abnormal protein called that disrupts nuclear structure and accelerates aging processes characteristic of HGPS. HGPS is an extremely rare autosomal dominant , occurring in approximately 1 in 8 million live births, where affected children experience rapid aging at about eight times the normal rate, primarily impacting growth, cardiovascular health, and skeletal development. Doctors provided an initial prognosis of a between 8 and 13 years, emphasizing the high risk of fatal heart disease or due to progressive arterial stiffening. The diagnosis delivered a profound shock to Okines' family, with her parents, Kerry and Mark, grappling with depression and briefly separating amid the emotional strain before reconciling. Determined to foster normalcy, they opted to enroll Hayley in mainstream schooling from an early age, supporting her attendance at local institutions like Bexhill High School to integrate her socially and educationally. The family also quickly connected with the Progeria Research Foundation (PRF) for guidance and resources, marking their early engagement with international support networks dedicated to the condition.

Health journey and treatments

Progeria symptoms and progression

Hayley Okines exhibited the hallmark symptoms of Hutchinson-Gilford Syndrome (HGPS), a rare that accelerates aging in children. By age two, she experienced total baldness, losing all mature hair including eyebrows and eyelashes, leaving only sparse downy hair. Wrinkled, aged-looking skin emerged early, with tight sclerodermatous patches on her and thighs, accompanied by a generalized loss of body fat that gave her a frail, emaciated appearance. Stiff joints developed around age three, affecting her elbows, knees, wrists, ankles, and hips, leading to contractures that limited flexibility and caused pain. Cardiovascular complications, including progressive and rigid arteries, resulted in heart strain and elevated risks of failure, though initial symptoms like appeared later in childhood. The progression of Okines' condition followed the typical rapid trajectory of HGPS, with severe growth failure evident by her second year, stunting her height and weight well below the third percentile for her age. By age 10, her physical appearance resembled that of an 80- to 100-year-old adult, characterized by a wizened face, prominent veins, and minimal body mass; she wore clothing sized for a young child, equivalent to a six-year-old. Her growth remained profoundly limited throughout adolescence, reaching only about 3 feet 9 inches tall, far shorter than her siblings—a nine-year-old brother and six-year-old sister—who towered over her. Hip dislocations and compounded joint stiffness by her early teens, severely impairing mobility and contributing to a frail physique prone to . Daily life for Okines was marked by significant physical challenges stemming from her condition's effects. Mobility became increasingly restricted; by her mid-teens, hip issues prevented her from walking unaided, necessitating a wheelchair for longer distances and assistance for basic movements. She faced persistent joint pain and instability, which limited play and routine activities, while the lack of body fat caused discomfort from minor injuries and cold sensitivity. Dietary management was essential early on due to feeding difficulties and failure to thrive, though she maintained a positive routine around meals despite her small stature. Emotionally, Okines endured the toll of her visible differences, including and stares at school that made social interactions challenging and contributed to periods of isolation. Despite this, she demonstrated remarkable resilience, maintaining an optimistic outlook and engaging in coping mechanisms such as reading and dreaming of creative pursuits to navigate the psychological strain of premature aging. Her maturity often exceeded her years, helping her process the of her condition's limitations while fostering .

Experimental treatments

In 2007, Hayley Okines began participating in a clinical drug trial sponsored by the Progeria Research Foundation (PRF) at , marking one of the first such efforts for children with Hutchinson-Gilford progeria syndrome (HGPS). The trial involved , a farnesyltransferase inhibitor designed to block the buildup of the abnormal protein that drives the rapid aging process in HGPS by inhibiting its farnesylation. This was combined with pravastatin, a to address cardiovascular stiffness, and zoledronate, a to support and prevent fractures—administered as a three-drug regimen. The treatment required frequent monitoring and administration, including intravenous infusions for zoledronate and oral capsules for , with Okines making multiple trips to over several years for dosing and evaluations—described as grueling quarterly visits that her family endured to continue the protocol. While the regimen did not cure HGPS, preliminary trial results indicated partial success in slowing disease progression, such as improved vascular health and modest gains in weight and density, contributing to Okines living beyond the typical 13-year prognosis for the condition. In addition to the trial drugs, Okines received supportive interventions tailored to HGPS complications, including ongoing therapy with pravastatin for cardiovascular protection, bisphosphonates like zoledronate to mitigate osteoporosis-related risks, and a low-dose aspirin regimen to reduce the likelihood of strokes and support heart health—standard measures recommended for patients. In February , she underwent surgery to address a dislocated , a common orthopedic issue in HGPS due to instability, following an incident at that necessitated manipulation and repair to restore mobility. Overall, these experimental and supportive treatments enabled Okines to reach the age of 17, outliving predictions by four years, though she experienced side effects such as fatigue from , which is known to cause tiredness alongside gastrointestinal issues in some patients. The interventions highlighted the potential for targeted therapies to extend in HGPS, even if halting the underlying aging process remained elusive.

Activism and public advocacy

Fundraising initiatives

Hayley Okines actively participated in and inspired several fundraising efforts to support research through the Progeria Research Foundation (PRF) and to cover costs for her treatments. One notable collaboration occurred in 2005 when London's Chelsea Football Club, the 2004-05 champions, organized a charity of signed team memorabilia in her honor, raising £3,281.58 (over $6,100 USD) for the PRF. Okines's public profile also motivated personal challenges among supporters. In June 2005, her friend Steve Keens completed a 927-mile ride from to —the classic "End to End" route across the —to benefit Okines and the PRF; the effort generated £2,000 in total donations, with £1,000 directly presented to her family and the foundation. On a personal level, Okines and her family drove multiple initiatives, including school-based events at Bexhill High School and online donation campaigns via platforms like , to fund her experimental treatments and related travel expenses. A major focus was a 2010 drive to host the first family reunion, inviting 24 affected families from ; the event, held August 6-12 in Ashford near , required £32,000 overall, with the family seeking £18,500 after a £13,500 contribution from the Progeria Family Circle to cover travel, accommodation, entertainment, and outings. These combined activities, along with community-inspired events like a 2010 U.S. dedicated to her cause, channeled significant resources toward research and support for affected individuals.

Awareness campaigns and speaking engagements

Hayley Okines began engaging in awareness efforts for as a young teenager, serving as a supporter and participant in events organized by the Progeria Research Foundation (PRF) to share her experiences and promote understanding of the condition. At , she traveled to for the PRF's tenth anniversary scientific workshop in April 2010, where she joined her parents on a family panel moderated by journalist Amy Dockser Marcus. During the session, Okines answered audience questions about aspects of living with progeria, including her school life and daily challenges, contributing to discussions among families, scientists, and clinicians from 10 countries. In 2011, Okines delivered a prepared speech at the Progeria Research Day event at Brunel University in , addressing an audience of researchers, families, and medical professionals. She expressed thanks to the scientists and clinicians advancing treatments for Hutchinson-Gilford Syndrome, emphasizing the human side of the research and the hope it brought to affected individuals. The presentation, delivered just before the lunch break, underscored her role in bridging personal narratives with scientific progress. Okines promoted broader awareness through collaborations with UK media, including features in The Sun newspaper that highlighted and encouraged public support for . Her efforts helped amplify the condition's visibility. The PRF later credited her courage and spirit with advancing their mission to educate and fund for .

Media presence

Television and documentary appearances

Hayley Okines appeared in several television programs and documentaries that highlighted her experience with , focusing on her daily challenges, medical treatments, and resilient spirit. These features aimed to raise awareness about the rare genetic condition, often portraying her as an inspirational figure navigating an accelerated aging process. In the , Okines was first profiled in the Channel 5 series Extraordinary People. The episode "The Child Who's Older Than Her Grandmother" documented her life at age five, emphasizing the rapid physical changes caused by and her family's efforts to provide normalcy amid medical realities. An update aired in 2005, continuing to explore her progression and hopes for future treatments. Another UK documentary, Extreme Aging: Hayley's Story, aired on Discovery Health Channel in 2009. This program delved into Okines' routine struggles with mobility, pain, and social interactions, while underscoring themes of hope through her participation in experimental therapies and her determination to live fully despite a limited prognosis. On American television, Okines featured in ABC's 20/20 in the 2010 episode "7 Going on 70," where correspondent interviewed her and her family about the impacts of and ongoing research into , a drug trial Okines joined to slow aging symptoms. A follow-up segment in 2011 further discussed her health improvements and efforts. Internationally, Okines appeared in Australia starting in 2007, with reporter chronicling her story of defying expectations through school attendance and public speaking. Updates, including one in 2014, highlighted her evolving condition, family support, and contributions to research funding. She appeared in broadcasts across multiple countries, consistently emphasizing perseverance and the need for medical advancements.

Celebrity interactions

Hayley Okines had several notable personal encounters with celebrities, which often stemmed from her advocacy efforts and helped amplify awareness of . One of her most publicized meetings occurred in December 2010, when she met pop singer at a hotel, arranged as a surprise for her 13th birthday through a viral campaign using the #BiebsMeetHayley. During the encounter, Bieber hugged Okines, signed autographs for her family, and gifted her tickets to his upcoming concert, describing her as "very special" in a tweet that further spread her story online. This interaction generated significant buzz, drawing global attention to and inspiring fans to support related research initiatives. In 2002, at the age of four, Okines met then-Prince (now King Charles III) at the Woman's Own Children of Courage Awards in , where she was honored for her bravery in living with . was charmed by her personality and later recalled being "deeply impressed by her incredible spirit" in a 2015 tribute following her death. Okines also met Australian singer , a longtime idol, during one of her international travels, an experience she described as exhilarating in interviews. Similarly, she encountered music executive , to whom she presented a charity CD she had recorded to raise funds for research. Okines formed particularly warm connections with members of British pop groups. She met Girls Aloud singer on multiple occasions, with Roberts later paying tribute to her as "truly a light" after her passing, highlighting the inspirational impact of their interactions. She also met members of , including , who described her as one of the "sweetest people" with a "big heart" following their encounter. These off-camera meetings, often facilitated through charity events or mutual networks, not only provided Okines with joyful moments but also elevated her profile, encouraging broader public engagement with awareness.

Literary contributions

Authored books

Hayley Okines co-authored her first autobiography, Old Before My Time: Hayley Okines' Life with , with her mother Kerry Okines and family friend Alison Stokes, published in 2011 by Accent Press Ltd. The book chronicles her experiences living with Hutchinson-Gilford syndrome from her diagnosis at around 21 months old through her early teenage years, including the challenges of premature aging, the loss of her best friend to the same condition, and her participation in pioneering drug trials in the United States. It highlights moments of joy, such as meeting celebrities like , , and , while emphasizing her determination to live fully despite the disease's typical of 13 years. In 2015, Okines released her sequel, Young at Heart: The Likes and Life of a Teenager with Progeria, again co-authored with Alison Stokes and published by Accent Press Ltd. This work focuses on her teenage years, detailing ongoing treatments, personal aspirations, and relationships, while underscoring a message of positivity and resilience amid the progression of progeria. The book was published in March 2015, just weeks before Okines's death on April 2, 2015, and reflects her hopes for the future and advocacy for others with the condition. Her narrative style incorporates humor to balance the hardships of with her advocacy for research and awareness, aiming to inspire readers and humanize the experiences of those affected. Both books received positive reception for their candid portrayal of living with and their role in raising public awareness of the rare disorder. Old Before My Time was praised by celebrities like , who described Okines as "an extraordinary girl," and contributed to broader discussions on aging research through Okines's involvement in clinical trials. The autobiographies remain key resources for understanding the personal impact of the condition.

Inspirational writings

Hayley Okines shared her experiences and messages of resilience through shorter written works, including online posts on platforms, where she openly discussed living with and inspired others facing challenges. These posts emphasized themes of empowerment and overcoming , encouraging readers to embrace life despite adversity. Her writing style, honed through her authored books, carried over into these episodic contributions, blending personal anecdotes with a positive outlook on "aging gracefully" amid rapid physical decline. One notable post highlighted her determination to defy medical expectations, resonating widely with audiences and underscoring her anti- advocacy.

Death and legacy

Circumstances of death

In March 2015, Hayley Okines was admitted to Conquest Hospital in , , after developing , a condition exacerbated by her Hutchinson-Gilford (HGPS), which had severely weakened her lungs and heart over time. She battled the infection for approximately two weeks, during which her progeria-related inability to produce sufficient further compromised her . On April 2, 2015, Okines was briefly discharged and returned home to , where she spent her final hours surrounded by family, including her mother Kerry, father Mark, siblings, and pets; she died peacefully at 9:39 p.m. at the age of 17, holding her parents' hands. Just prior to her admission, she had celebrated the publication of her second book, Young at Heart, on March 19, 2015, and in its pages and recent interviews, she reiterated her strong advocacy for ongoing research to benefit future patients. The official cause of death was resulting from , directly attributable to HGPS complications, with no other contributing factors identified.

Posthumous impact

Following Hayley Okines' death in 2015, her participation in the was credited by the Progeria Research Foundation (PRF) with helping elevate to a priority in , as she was among the first enrollees in the study of this farnesyltransferase inhibitor. The trial's outcomes, including data from participants like Okines, supported the U.S. Food and Drug Administration's approval of (marketed as Zokinvy) in November 2020 as the first-ever treatment for Hutchinson-Gilford syndrome, demonstrating improved survival rates by reducing accumulation and extending average lifespan by several years. was also approved by the in July 2022. As of 2025, PRF supports additional clinical trials, including gene editing therapies, building on foundational work from early participants like Okines. Okines' advocacy inspired widespread tributes, including from Prince Charles, who praised her courage and the global awareness she fostered for the condition affecting approximately 153 children worldwide with HGPS as of September 2025. Her mother, Kerry Okines, has sustained this legacy through public appearances and interviews, such as on ITV's Jeremy Kyle in 2016, where she discussed Hayley's enduring influence on families facing progeria and emphasized ongoing efforts to support research. PRF has continued to reference Okines' story in its campaigns, contributing to heightened international recognition of progeria, including expanded participation in annual awareness initiatives.

References

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