Hayley's hopes for UK reunion

The 12-year-old and her family want to host the first ever UK reunion for children suffering Progeria.

Hayley urgently wants to bring the reunion home to Britain but first there is a mountain to climb because the estimated cost is around 30,000.

Mum Kerry this week told the Observer how much hosting the reunion meant to the whole family including herself, husband Mark, and Hayley's brother and sister, Lewis and Ruby.

They have attended reunions for the past six years in Europe and worldwide events held in America for the 60 or so children across the globe who have the rare genetic disorder, which causes rapid ageing.

Kerry admitted they have a battle on their hands to find the money but felt it was even more important because the worldwide events are no longer being held.

She said: "This week will mean so much to the families who have to live with this condition. We have invited 24 families and already 10 have said they are definitely coming.

"The reunion will be in Ashford '“ we decided to hold it there because it is closer to Eurostar and the ports."

The Okines will have to fund the trip for visitors including travel, accommodation, entertainment, food and drink, and outings. The reunion will be from August 6-12, and the family is working closely with the Progeria Family Circle which helps organise European events and will provide 13,500 towards the total cost.

Kerry and Mark have estimated that of the 32,000 total, they will have to find 18,500 themselves to cover everything from flights to presents for the children.

Kerry said: "I know we have asked for a lot in the past.

"Everyone rallied around for Hayley to go to Florida when she was first diagnosed and lots of people have followed her story for years.

"I hate asking again because we have done it so many times but without that support we can't do it.

"Hayley has had lovely holidays in the past. She has got to do a lot in her short life, but that is my job as a mum, what I have to do, to fulfil all her dreams and pack in as much as we can, because we don't know how much longer we are going to have her.

"We get such a lot of messages through her website with people saying she is such an inspiration. She brightens up a room when she walks in, and she captures the hearts of so many people.

"But I can't do this without people's support. It is so important for Hayley and us as well as all the other families.

"It means so much for her to invite her friends to come over and show them where she lives."

Hayley won fans all over the world with her lovely smile and feisty personality when she was the subject of three documentaries filmed for the Channel 5 series Extraordinary People.

She has been in the public eye for the 10 years since she was first diagnosed, but less so in the last two- and-a-half years because she has been taking part in drug trials for the Progeria Research Foundation in Boston, America.

The family was asked not to jeopardise the process by discussing it in public.

Hayley has been on a drug originally developed to treat cancer, called farnesyltransferase inhibitors, and has just been started on a new combination with pravastatin and nitrogen bisphosphonate.

She received an infusion into her arm which took 30 minutes and which will provide her with enough medication to last six months.

Her next visit to Boston will be on April 10 when she will be at a three-day workshop attended by 125 scientists and doctors who have worked on treatment of the disorder, to give them a chance to talk to children and their families about their experiences.

In the meantime Kerry said: "Hayley has been fantastic.

"She has grown half an inch in six months."

Another development for Hayley has been moving up to Bexhill High School where she is in year seven.

Kerry said: "She loves it. She has a good support system up there...and has made lovely new friends.

"She has got on really well '“ she was really tired for the first few weeks but has settled in really nicely."

To donate money for the reunion go to hayleyspage.com for details, or use PO Box 178, Bexhill TN409AF.