HAYLEY OKINES: BIOGRAPHY - CULTURE VOCABULARY - 2025

Hayley Okines (1997-2015) was a British activist who passed away in her teens from a genetic disorder known as Progeria. For most of her life, she dedicated herself to making this disease known to the general public, as there is little knowledge about its causes, consequences and reasons why it exists.

Hayley wrote two books in which she tells the world what it feels like to be a girl (and later a teenager) suffering from a disease like Progeria. This disease causes the body to age at an extremely accelerated rate, which is why "I had the body of a 100-year-old person, even if she was only a teenager."

By Michelle Olive, NHGRI, via Wikimedia Commons

The young woman received a lot of attention from the British media. She was also subjected to a large number of examinations and medical tests, which allowed her to live a few years longer than what doctors expected when she was diagnosed.

Biography

Birth

Hayley Leanne Okines was born in Cambridgeshire, England, on December 3, 1997. She was born a normal girl; neither the doctors nor her parents suspected that she had genetic problems as a baby.

However, when she was two years old, she was diagnosed with Progeria. As in most cases of this disease, it usually takes time after the baby is born for those around her to begin to notice changes in her physique and health.

When the girl was diagnosed with this disease, doctors estimated that she would live to be 13 years old.

Progeria convalescence

Progeria is a genetic mutation that affects the way the body ages. In addition, it brings a lot of negative repercussions to people's health, such as contraction of pneumonia, paralysis and other internal diseases.

Hayley suffered from a significant growth limitation, one of the main effects of Progeria. In addition, the aging of the skin and the loss of hair were symptoms that appeared from a very young age.

As he grew older, the damage to his body became more apparent. Progeria also often causes kidney failure in humans. The young woman's body was the same as most of those who suffer from this condition: weak, fragile and small, similar to the body of an old man.

The mental capacity of the young woman was never affected by the symptoms of this disease. In fact, the major damage Okines' body received was merely physical. Hayley's organ health was always very poor, but she always retained her ability to understand.

Lifetime

As a child, she lived a relatively normal life excluding the clear symptoms of her Progeria. Just like any young man her age did, she would exchange harsh words with her mother and then apologize.

However, she was unable to live a life like that of a young teenage girl when it came to hanging out with other people, dating, or even going to parties. Hayley understood her condition and did the best she could over the course of her life to live it as fully as possible.

After he turned 13, he said publicly that he felt he had a future to plan. She was always positive when it came to her life expectancy, although the doctors knew that she could die at any moment.

She managed to live an extraordinary life, beyond the physical problems that affected her. She met a host of stars, including Justin Bieber. The Canadian singer was the idol of Okines, and the young woman fulfilled her dream of meeting him thanks to Bieber's followers on social networks, who asked her to do so.

He passed away at age 17 (living four years longer than doctors expected), on April 2, 2015, in East Sussex, England.

Public appearances

Hayley made several public appearances as an activist to promote awareness of Progeria.

The American channel Discovery Health proposed to him to record a television special, which was titled "Extreme Aging: Hayley's Story." The documentary talks about how dangerous the disease is and the lack of an existing cure.

However, there is also talk about the work that doctors today are doing to develop a solution to this genetic disorder. It is possible that a cure will be reached eventually.

A documentary was also made in his country in which his living conditions and the options he had to move forward day by day are explained. The documentary program, which deals with the cases of people with atypical conditions, is called "Extraordinary Lives" and Hayley was invited to be part of an episode.

Other TV shows

Hayley was also invited to many other television shows in which she was talked about and the condition afflicting her. One of her most interesting appearances was on a British show where her host, Michale Mosley, sought to explain the reasons for aging in human beings.

One of the reasons that Progeria so quickly affects the appearance of a person's age is because of the short nature of telomeres (a repeating region on chromosomes) that causes the disease.

Its production is believed to be related to aging, and the television show explored Hayley's relationship to this characteristic.

He also participated in other British and Australian television programs, where his treatment and his life were analyzed in depth.

Books and monetary collections

Hayley wrote two books explaining her life and experiences with Progeria: Old Before Time and Young at Heart. The second book explains her life as a teenager, while the first covers her years as an infant.

His family raised money to treat his condition, but they were also helped by the Progeria Research Foundation, founded by the parents of Sam Berns, another famous activist and convalescent from the disease.

References

1. Hayley Okines Biography, IMDB, (nd). Taken from imdb.com
2. Hayley Okines, Wikipeda in English, 2018. Taken from wikipedia.org
3. Progeria, Wikipedia in English, 2018. Taken from wikipedia.org
4. Hayley Okines: Inspirational teenager's life in her own words, Article by S. Adams in The Daily Mirror, 2015. Taken from mirror.co.uk
5. Book Review: Old Before My Time, Lisa, 2011. Taken from mama.ie