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Hayley

Okin has progeria, a rare disease that causes the age of eight times faster than usual. At age 14 has already exceeded its life expectancy. Tension in your family is huge, but somehow still hope

Okin

Hayley was 21 months old when doctors at Great Ormond Street Hospital in London, told his mother that he was unlikely to live past 13. Okin Kerry remembers well how it felt to hear those words in 1999 - numb. She was anesthetized by premature disbelief and pain. Shock turned into a depression that quickly spiral of suicide and even infanticide -. Thoughts

"We knew it would happen, just do not know when," said Kerry, 37, in memory of his innocent family struggle with the state of progeria, old before their time.

But 12 years and hundreds of hospital visits, have passed since Hayley was diagnosed with Hutchinson-Gilford syndrome, progeria, and fatalism is understandable that the first step involving the family has evolved into a more positive, moderate realism.

"There is much to be positive on many things have changed since the diagnosis of Hayley gene has been identified, treatment options are developed -.. there was nothing 12 years ago , so I always stick to what little hope, "said Kerry's family home in Bexhill-on-Sea, East Sussex coast." When Hayley was first diagnosed, I could not imagine her being here tomorrow, let alone go to elementary or secondary school, even. It was incredibly difficult to handle at first. "

In the book, Hayley is very frank about his future. "I'm not worried about death said the Titanic did not sink, but he did, so it's experts can be wrong and I want to show the doctors wrong. Basically, I'm no different from anyone. "

is a view shared by his mother. "Apart from progeria, Hayley is like any other teenager grumpy."

Description

admirable optimism is a normal home, but the truth is more complex. Hayley progeria, which affects one in 8 million children, this means that the woman ages eight times faster than average. It is one of four children in Britain and one of 74 in the world with the disease, whose symptoms reflect the symbols of degenerative aging.

Like most other children with progeria, Hayley growth is severely limited - a nine year old son, brother, Luis, and her sister, Ruby, six, rising on her frail physical and is now wear clothes designed for children six years. It is also susceptible to heart problems and cardiovascular, renal failure, stiff joints and hip dislocations.

family difficulties

sadly proved too much pressure on the marriage of the father of Hayley Kerry, Mark, who finished in late 2010. "It's a bit of a fight, now that Mark and I are separated," said Kerry. "Obviously it's harder to be a single mother, but we share the care and progeria, but it was an important factor that can not be blamed entirely on the division it.

"People deal with things differently. He will open or close. From the beginning, Mark was a lot to look at things carefully and see if we could find other families, while I would be happy just being at home and take care of Hayley, my way. You could see early on that we were going in different directions. "

Kerry and Mark are united in one thing from the beginning. The desire to minimize the potential damage psychological Hayley looks strange and cruel comments

So instead of retiring to a solitary life threatening not undertaken a mission to promote public knowledge of the limited world of progeria, appearing in a documentary series for Channel Five in the number of people extraordinary. The result is that people are looking at Hayley, but also to say, "Oh, look, that Hayley at the TV."

Being on TV has also opened doors normally closed to teen celebrity obsessed. Hayley growing list of high-level meetings reads like a list of Who is who? "I met Simon Cowell once. Kylie Minogue. And I found for my birthday Justin Bieber 13, "she said in a voice as light as his little body." And Cheryl Cole and Nicola Roberts of Girls Aloud. And Max of research, said he loved me. "

This statement provokes cries of hysteria Hayley, who is clearly not in agreement: "Ruby is a terrible pitcher angry," she said. "I try to be the boss, but he ignored me, so sometimes throw things at them."

"See what I mean? We are like a normal family. "

normal in January 2012 by Hayley will result in a week in intensive care, followed by 10 weeks of recovery after an operation essential to repair the hip dislocation, which means it can not work without assistance at the time.

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