Mar 212012
 

The secret is out. Tomorrow morning I am going to be interviewed on BBC Breakfast. Although I’ve been on loads of TV programmes this is the first time on the BBC Breakfast show and I’m really excited. They are going to talk to me about my book Old Before My Time

I’ll be going up to London with my Mum and Nanna. We’ll be on air between 8.30am and 9 tomorrow, so tune in if you can.

 

Mar 152012
 

Everyone says that my mum is an inspiration.  Read her special Mother’s Day story adapted from our book Old Before My Time.

When doctors told Kerry Okines her baby daughter Hayley was suffering from a rare ageing disease and she was unlikely to live beyond the age of 13, she initially decided she would end both their lives.

But 12 years after the shock of discovering her baby was one of only 40 children in the world suffering from the rare genetic condition Hutchinson-Gilford progeria which makes her age eight times faster than normal, Kerry has turned her negative feelings into positive action and become an inspiration for mums all over the world.

Everything was perfect when Hayley was born on December 3 1997, a healthy baby with a thick mop of brown hair.  But by the time Hayley reached her first birthday and was barely the size of a three-month-old baby Kerry started to worry and after a referral to Great Ormond Street Hospital and six months of exhaustive tests, a skin biopsy finally confirmed that Hayley was suffering from progeria, a  disease which affected just one in eight million children.

‘When the doctor first confirmed that Hayley had Hutchinson-Gilford progeria, I remember the whole room became a blur, Kerry recalled. ‘At that time there was very little information available about the condition and only 40 other known cases in the world. Hayley’s dad Mark and I were shocked when we looked on a friend’s computer and saw photographs of children who looked like old people.

‘I remember asking the doctor ‘What’s the prognosis?’ to be told that the life expectancy was 13. When I heard that I collapsed on the floor, like someone had just pulled the carpet from under my feet.’

‘For months after the diagnosis, I harboured thoughts of death,’ Kerry confessed. ‘I was living one day at a time, expecting each day to be Hayley’s last. The burden was overpowering. If my baby could never live a long and healthy life, then why should I? I felt guilty that I had planted this ticking time bomb inside Hayley and I was the one who should be punished. I planned to kill us both. 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.’

Although she didn’t know it at the time, Kerry was suffering from depression and her suicidal intentions led to a nervous breakdown.

But with her family’s support, Kerry recovered and decided to make every day of Hayley’s life a happy one. Never accepting that Hayley’s life would be limited, Kerry and her now ex-husband Mark set about devoting all their energy into finding a cure for her daughter’s terminal illness and making her dreams come true.

Through their charity Hayley’s Hope Kerry and Mark have raised money to bring all the known progeria children across Europe together for an annual holiday, they have taken Hayley on holiday to DisneyWorld, Florida and arranged for her to meet her celebrity idols from Kylie Minogue and Girls Aloud to Justin Bieber and The Wanted.

In 2007 they were offered a lifeline to take part in a series of pioneering drug trials in Boston, USA, which Kerry believes has helped to extend Hayley’s life beyond the average expectancy of 13. In December Hayley celebrated her 14th birthday and later this year she hopes to take part in another pioneering drug trial in France, which she hopes will also improve Hayley’s life expectancy.

Thanks to their campaigning and their drive to publicise progeria through television documentaries and magazine interviews, more children have been identified with the disease. There are now four known children in Britain and 74 children in the world. And Kerry and Mark have added to their family with two other healthy children Louis, nine, and Ruby, six.

When Kerry and Hayley recently published their autobiography Old Before My Time (Accent Press), their story touched the hearts of many mothers across the world. Inspired by Kerry’s honesty, other mums have said how their story has helped them to face their own tough times.

‘I have always hoped that Hayley would prove experts wrong and she has,’ said Kerry. ‘Whenever I look at her and see how happy and well-adjusted she is it, I am always reminded of those early days when I wanted to take both our lives. Now I am so glad I never carried out my plan. I would have robbed her of an extraordinary and long life. Hayley would never have made the good friends she has or met all the famous people and other special children.

‘But I am also aware that every day could be the last I have with her. I try not to think about it but I can’t help myself. I have tried to give Hayley as normal and full a life as possible. I want to give her everything she wants but there’s a fine line between making her happy and turning her into a spoilt brat.’

‘When we first came to terms with progeria doctors warned us that heart attacks and strokes were the biggest problems. Thanks to all the drug trials Hayley’s heart is strong but we never thought that her mobility would be an issue.

Despite her lack of mobility, Hayley will be making sure her mum feels special this Mother’s Day and is planning a meal out at a local restaurant with her brother, sister, aunt and cousins.

Kerry said: ‘Every Mother’s Day is special for me. I keep all my Mother’s Day cards from all the children in a memory box. But every year I never know if it will be the last one I get from Hayley.’

Adapted from Old Before My Time: My Life With Progeria by Hayley and Kerry Okines Published by Accent Press Ltd, price £9.99. ISBN: 9781908192554

http://www.amazon.co.uk/Old-Before-My-Time-Progeria/dp/1908192550/ref=cm_cr_pr_product_top

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Mar 122012
 

Guess what? I’ve been invited up to London to appear on live TV. Can’t say much more at the moment, but watch this space.  Clue: I’ll have to get up very early

Feb 092012
 

Hayley Okines copyright Express Newspapers

A NEW book and documentary tells the inspiring and moving story of Hayley Okines…

In many 13-year-old Hayley Okines is like any typical teenager. She likes clothes, boys, Justin Bieber, experimenting with eye make-up and reading books by Jacqueline Wilson.

But she also has to deal with things most teenagers never have to consider, such as baldness and hip problems.

Hayley suffers from a rare genetic ageing disorder called progeria that means she ages eight times faster than other people.

Although mentally she is still a teenager her body is already that of a 110-year-old woman. Her translucent skin may have little elasticity and something of a grey pallor but you barely notice this because Hayley’s big blue eyes sparkle so mischievously.

Her hair may grow only sparsely – just seven hairs to the square centimetre – but she responds with a characteristic flourish by covering up her head with brightly coloured bandanas and dreaming at night of awaking with flowing locks.

“It’s very annoying having an old lady’s body,” she says in her sweet voice . “But the thing I hate most is my lack of hair. I’ve wanted hair for as long as I can remember. I want to be able to flick it in the wind ,” she laughs.

Despite her physical problems Hayley is full of impish humour and exudes radiance and joie de vivre. “I want to live longer because I enjoy life ,” she says.

“There are ups and downs but I keep my chin up.” She suffers from arthritis, is at constant risk of a stroke or a heart attack and her hips keep sliding out of position due to deterioration in her bones.

On the day we talk she had once again been rushed to hospital to have her dislocated left hip manipulated back into the correct position.

This injury occurred despite the fact that Hayley has recently started wearing a hip brace 24 hours a day and has not been able to attend school since April due to her weakness in walking (she completes work online instead and hopes to go back to rejoin her friends soon).

She says the brace made her feel for the first time what it was to be old. “To begin with she absolutely hated wearing it,” says her mother Kerry, 37, “but she has now got used to it and it gives her a feeling of security.”

Hayley hopes fervently she won’t have to wear it for the rest of her life. Although customised with a funky purple lining, its presence is a reminder of the challenges she faces every day.

“I put her to bed every night and I don’t know if it is the last time I’m going to see her,” says her mother. “I try to push that thought to the back of my head. You never get used to it but you can learn to live with it.”

Worldwide, there are only 80 or so known cases of progeria at any one time. The average life expectancy for a child with the rare genetic mutation is just 13 years.

Hayley will be 14 on December 3. “I’m definitely not going to give in until I’m at least 18 so I can learn to drive – I’m going to get a Mini!” she says enthusiastically.

Knowledge of our own mortality is part of the human condition. It galvanises us to seek happiness. For Hayley and her family this is especially true.

“Some children with progeria pass away when they are still very young but I have known others who have gone on until they are in their early 20s,” says Kerry.

“We didn’t really celebrate Hayley’s 13th birthday because I was a little bit scared of what that age represented but this year, when she turns 14, we are going to have a big celebration.”

No doctor can predict how much longer Hayley has to live, although she does seem to be responding well to pioneering new treatment, even growing a few more centimetres in the past couple of years.

“No one knows how many more years the drugs will give me although I’ve known I could die from progeria for a while now,” she says. But she chooses not to dwell on this fact. “Remember, I am 13 which means I have an attitude and a messy room.”

Closer at hand is the frustration when she goes shopping with her best friend Erin who towers over her. The sort of clothes that appeal to Hayley’s fashion sense just hang off her body.

At 3ft 9in and weighing just 2½st, Hayley is the size of an average four year- old and her clothes have to be chosen
from very junior ranges.

Next spring she will embark on a pioneering drug trial into a chemical that may have the capacity to halt the ageing process.

“We are cautiously optimistic,” says Kerry, who has had her hopes dashed before. “I just want to find out if it’s a miracle drug like they’ve been saying,” adds Hayley.

“I take every day as it comes. I don’t think too much about what’s happened and I look forward to getting on with tomorrow.”

She is a sweet-natured girl who is loving, considerate and grateful for the support she has received from her friends, family and her remarkable mother, with whom she has just finished writing her autobiography.

Kerry comes across as forthright, direct, tough-minded and absolutely dedicated to ensuring her eldest child gets the best chances she can.

Hayley has two younger siblings, Louis, nine, and Ruby, six, who are not affected by progeria and who tower over their sister.

Kerry’s husband Mark, 50, from whom she separated last year, is equally determined to ensure that Hayley’s life is as enjoyable and enriching as it can be.

“Mum is very strong and really, really supportive of me. Last Christmas she asked me if I wanted to write my autobiography,” Hayley recalls. A publisher was duly found.

Hayley is now focusing on her career options. “I want to be a beautician or a photographer. I imagine it all. I just want to be a normal teenager.”

Express Feature by Jane Warren

Feb 092012
 

This December, my daughter Hayley will be turning 14. Like other girls her age, she’s a typical teenager – she can be gorgeous, she can be moody, she listens to The Wanted with the volume turned up too loud, watches Twilight and never tires of it, and she’s the queen of sleepovers with her friends. But unlike other teenagers, chances are that Hayley will have to spend her 14th birthday in hospital.

It wasn’t until she was three months old that my husband Mark and I thought there might be anything different about our daughter; she wasn’t feeding properly or putting much weight on, and I’d noticed a few lumps round her tummy as well as really tight skin – it looked like her stomach was wrapped in cling film.

I kept taking Hayley to the doctor but they said she was just a small baby. But when she was a year old and still the same size as a six month old, they started doing tests. A test for cystic fibrosis came back normal, as did all other blood tests, but then a skin biopsy revealed that her skin had very little elasticity in it – something which is associated with old age – and that’s when we were told that she could have Hutchinson-Gilford Progeria.

Progeria is a rare condition, characterised by the appearance of accelerated ageing in children – meaning their bodies age eight times faster than normal. Hayley was officially diagnosed with this condition that affects one in eight million children when she was two yearsold. On the day we were told Mark immediately went into research mode, wanting to find out everything he could, but I went into denial. I kept looking at pictures of children with Progeria on the internet and thinking that isn’t her, she doesn’t look like that, then looking at Hayley, the voice of the doctors echoing in my head.

“The life expectancy is 13,” they told us.

As I watched my daughter sleeping peacefully in her Moses basket, I just couldn’t believe it. ‘She hasn’t got that. She can’t have…they must be wrong….’ was all I kept thinking.

In the beginning it was incredibly hard. While I tried to stay strong, I was in shock and utterly devastated. I was 26 years-old and Hayley was my first child – the thought that she might not live long enough to become a troublesome teenager was too much to take. I was in a really dark place, but Hayley was the only thing that got me through it. Of course, she didn’t know what was going on, but seeing me sad she’d come up to me and rub my cheek, saying, “Mummy, what’s wrong?”

I’d do my grieving when she went to bed, as I didn’t want her to see me crying.

However, as the weeks went on, and with the support of Mark, our friends and family, I came to realise that we only had two options – when your life is torn apart you either sink into a horribly dark place or you try to make something positive out of it. And that’s what we did.

We got in touch with the Progeria Research Foundation in America, and with the Sunshine Foundation, the original wish-granting foundation in the US, which organises annual Progeria reunions for children and families affected by the condition. We took Hayley to her first reunion just six months after she was diagnosed. The week-long event was held in Washington DC, and Mark was really excited at being able to talk to other parents and get more information about things but, on the other hand, I thought it would be terribly depressing.

“I can’t go, everyone’s going to be sad, they’re going to be crying,” I kept on saying, right up until the day we left. But once we arrived my outlook changed. There were 27 children with Progeria at the reunion; and for them it was a never ending play-day of face painting and ball games. For the parents, there were all-important question and answer sessions with doctors and experts. The thing that struck me the most though, was how upbeat the parents and kids were.

As Hayley got older we tried to keep her life as normal as possible. She spent time with her grandparents, who doted on her, got more stubborn as children tend to do, and she liked dressing up as a princess. Of course, over time, her condition became more obvious. Her big eyes and frail features sometimes attracted the attention of strangers; people’s reactions to her were heartbreaking. She would be skipping along the street and we would see people turning round and walking back to have another look at her, but together we came up with a great way of stopping them in their tracks.

“Mummy, can I do it?” she’d say with a cheeky grin.

“Go on then,” I’d reply, and she’d stick her tongue out at them.

They’d look away embarrassed as we’d walk off, giggling.

And that’s the thing about Hayley; we’ve always tried to bring her up with no airs and graces. Like any mum, I was naturally worried about her starting school. After spending all my days with her and knowing that our time together was precious, I felt like I wanted to be with her all the time – why should the school have her for six hours a day? But we wanted her to have a normal life, and she was so excited about going to school – she made friends with children in her primary school who she is still best friends with to this day.

Over the years Hayley asked different questions about her condition, and although we told her she had Progeria, she didn’t initially grasp what that meant. We judged telling her about certain things depending on what she was ready to hear – the older children get and the more grown up questions they ask, the more they are ready to know. So, one day she would ask why she didn’t have any hair, and we’d explain that “it’s because of the Progeria (children with Progeria lose their hair, eyebrows and eyelashes from about the age of two onwards) and it makes you extra special.” However, a turning point came when her best friend Maddie, who also had Progeria, passed away. It was one of the worst days of my life. I stood at the door of our house with the key in the lock for 20 minutes not knowing what to say.

“Your friend was really tired and she has gone to sleep; she has gone to heaven,” I explained.

I think that that was the moment Hayley really understood what Progeria meant for her. She was just seven years-old at the time.

Thankfully, one of Hayley’s biggest traits is her positivity. When Maddie passed away, Hayley would tell me that she had come to see her in her sleep or would ask me if Maddie could come shopping with her. It was one of the most traumatic things that Hayley has ever dealt with, but she found an inspiring way to make sense of it. Even today, while she is waiting to have a hip operation which will probably mean she’ll spend her birthday in hospital, she is still strong. At 13 her body is that of someone over 80, and she is currently completely immobile – she can’t move, she can’t walk, and she has a little Zimmer frame.

Once the operation is over, we have some clinical trials coming up next March, which involve taking a course of tablets that the doctors’ hope will help Progeria children. This will be her third trial, and when someone offers you something like that, you just grab it with both hands. Hayley is keen to be involved in them because she knows it could make a real difference to her and to others. I’ve tried hard to make sure she gets to do the things she wants to and raise awareness of the condition. We have done documentaries on the subject, which helped three other families get their children diagnosed, and through raising awareness she’s been to lovely places like Egypt and Florida and got to swim with dolphins. Her book, Old Before My Time: Hayley Okines’ life with progeriais now available and it’s not only for Progeria children but for all disabled people, sending the message out that no matter what, you’re a person, and you should always try to look to the future.

The future for us now is to first get Hayley’s operation out of the way and to have her home for Christmas. This year, Hayley has told me she wants one of those Flip Video Cameras that you plug into a laptop, and we recently got a puppy that she named ‘Boo’, like the character from Monsters Inc. As for me, my Christmas wish is always the same: to have my little girl as healthy and happy as she can be.

This article was written by Harriet Sinclair for Ahlan magazine.

Feb 092012
 

Born with the rare genetic condition Progeria, Hayley Okines ages eight times faster than healthy people. Now 13, her body has the medical age of a 104-year-old woman.

Please click the link to watch the video http://tlc.discovery.com/videos/hayley-worlds-oldest-teenager-its-always-there.html