Fresh hope for Hayley in pioneering experiment with new cancer drug

Eight-year-old Hayley suffers from the rare genetic ageing disease which affects just one in four million. There are only four children in this country with the condition which results in restricted growth, baldness, hardened arteries, and osteoporosis.

Dad Mark this week told the Observer: "We have known about this treatment, this drug they are looking at, for quite a while.

"We are very excited about it for lots of reasons, but very cautious as well.

"It's a brand new drug that hasn't been tried out on anyone before."

Researchers from the University of California, Los Angeles (UCLA), are claiming a cancer drug can improve the signs of progeria in mice.

Their study involved trying out a Farnesyltransferase Inhibitor (FTI) on mice with the result they showed improvements in body weight, bone integrity, grip strength and survival compared with untreated control mice.

"This is the first study in an animal model to show that an FTI could be useful in treating progeria and related conditions," said Dr Loren Fong.

"We believe that these studies should give some hope to progeria patients and their families."

Hayley, who won over many hearts as the subject of a Channel 5 documentary looking at Extraordinary Lives, has been taking part in clinical trials in Washington DC, the home of the Progeria Research Foundation.

Mark commented: "We know Hayley is going to be one of the first to try it. She is one of 15 children taking part in research so she is going to be one of the ones to be offered it.

"But we can't say when it will be ready for us. I think it will be sooner rather than later - I think we are talking the next couple of years."

Hayley's mother Kerry added: "I feel a bit like Mark. I am obviously excited, but also apprehensive.

"We have got to go into this with our eyes open, and not be blown over with a miracle cure. But your heart wants to rule your head. And it's Hayley's choice at the end of the day - but knowing Hayley, we know she would definitely want to do this anyway."

They are both encouraged by the confidence shown in the drug trial results by Dr Leslie Gordon, the PRF's medical director, whose son Sam is a progeria child the same age as Hayley, and a personal friend.

"She is not going to give anything to her son that is going to hurt him," said Mark.

"We are very good friends with that family."

"We don't know yet whether it is going to stop the progeria, reverse the symptoms, treat some of the symptoms or what. We just don't know yet."

The couple say that when they told Hayley about the drug, her face "lit up".

"She always said she she loses her Progeria, she will grow taller and grow her hair," said Kerry.

"The PRF has only been going since 1999, so that shows the speed of how things are going. When we were at the first reunion there, nobody knew anything, there was no hope. Now five years later, they have found the gene that causes progeria, and possibly a cure."

Mark commented: "We know if it all works out, alright, Hayley will have been part of the research for the future. We know that she has been part of finding the cure, and even if it is not available in her lifetime, she has helped other progeria children."

Life has been "intense" at the family home in Meadow Crescent recently - a Japanese television crew has been filming for a two-hour documentary to be shown on the Tokyo 12 channel on March 10. The team spent two weeks capturing Hayley's daily life, including hospital appointments, horse-riding, and time spent with her palliative nurse.

As a treat afterwards, Hayley was given a Nintendo DS, a hand-held computer console on which she is currently training pet dogs and teaching them tricks.

This is going to be a big year for the family, which includes older daughter Stacey, Lewis (almost four), and baby Ruby who is now eight months and goes by the nickname 'Chunkus Munkus'.

Next month, Hayley's song Voices Of Tomorrow will be released on March 17, with a concert following at Bexhill High on April 15.

The couple have been told if 2,000 copies of the CD are sold, then Hayley will go into the top 40 chart - with all proceeds going to the PRF.

For her birthday on December 3, she was taken to the South of France where she swam with dolphins. Her experience was filmed by BBC's This Morning programme, which Kerry saw on television although unable to go herself because of sickness.

"It made me cry when I watched it, it was so lovely."

Hayley is off to Ireland next to swim with dolphins there, but in the meantime her parents have a couple of treats of their own.....they have booked a weekend break to enjoy some long overdue time together, and have announced they are getting married on July 29 at Hastings Register Office.

"Hayley always says if two people love each other, they should be married", said Kerry.

"It's been nine years now, so.....

"She is going to be a bridesmaid and she's really looking forward to that. There are lots of things to look forward to this year."

Dresses have not yet been chosen for the event, but it's expected Hayley will be wearing her favourite colour.

"It will be pink, whatever it is," said Mark.

Stacey, Lewis and Ruby will be suitably attired for what will be a double wedding with Kerry's cousin Peter Capon, who is marrying Christine Andrews - their daughter Macy will also be a bridesmaid.

Mark and Kerry will not hold the reception immediately, but instead will leave by limo to go to a festival.

"We thought, what better than to get married and go off to dance the night away."

Mark has been asked by the PRF to head a UK branch, to raise money in this country towards research, so hopes to start work on the project this year. He is in the process of registering the charity, and says he is "very excited".

"It is just something we have talked about doing since the first reunion we went to. I know there is a lot of people willing to donate here - the Foundation has had a lot of donations through us anyway. I will go out and do some fundraising - it will be great, and give them a good push I think they need for research."

Correspondence can be sent to Hayley Okines, PO Box 178, Bexhill on Sea, TN40 9AF. Her website is: www.hayleyspage.com.