The English girl Hayley Okines died at 17 years of age, due to a rare disorder making her look like and feel as sick as a 100 year-old grandmother. Due to her illness, Hayley was aging 8 times faster than normal.
She was born with progeria a.k.a. Hutchinson–Gilford progeria syndrome (HGPS), a very rare genetic disorder affecting 1 out of every 8 million babies.
The condition speeds up the body's aging by up to 8 times, so in their teenage years, the person looks like they are 100 years old. In parallel, a series of other diseases develop, requiring strong medications at such a tender age.
Progeria is a result of progerin in the cells of the body, making them wear out much faster. The disorder changes the skin, muscles and circulatory system of the affected individual.
As such, the body's functions are severely disrupted as early as childhood. Experts say that the disease predominantly affects Caucasians, since it has been found that 97% of victims are white.
Usually, children suffering from progeria die at 13-14 years of age due to the body wearing out. The record for the oldest person with the disorder was 27 years old. Currently there are over 100 people suffering from progeria in the world.
While Hayley was still alive, she was taking all sorts of medications and even went through a revolutionary new treatment in the US but nothing managed to help her. With her positive attitude, Hayley won the hearts of many and met prince Charles, Kylie Minogue and Justin Bieber.
At birth she was like any other baby. However, at 3 months old, her parents noticed that their child was not gaining weight and that unusual spots had begun appearing around her stomach.
Up until the age of 1, medical doctors began all sorts of tests, after which they noticed that the baby's skin was losing its elasticity, thereby confirming the diagnosis.
When the 26-year-old mother learned of her child's ill-fated life, she confessed that for months on end she thought about killing herself along with her daughter.
"I mapped it all out in my head that I would drive us both out to a well-known local suicide spot at Beachy Head and put a hosepipe through the car window and drift away. But when I looked at little Hayley’s big blue eyes and smiling innocent face I realised I couldn’t go through with it, " shares her mother, Kerry.
Hayley lived and battled with her condition. She managed to reach a height of just over 3.3 ft (1 m) and a weight of 55 lb (25 kg). Together with her mother, they wrote the book Old Before My Time and filmed a whole series of documentary films about the rare disease.
