Five’s acclaimed documentary strand exploring remarkable tales of human experience from across the globe continues. This film catches up with progeria sufferer Hayley Okines, who has been the subject of two Five documentaries in the past.

‘Hope for Hayley’ continues the little girl’s bittersweet story in perhaps the most important year of her life so far –one in which she deals with the news that her condition may at last be curable. Progeria is an aggressive disease which ages its sufferers eight years for every year of their life. That is why, at nine years of age, Hayley has the body of a woman in her 70s.

Hayley’s parents, Kerry and Mark, have recently learned of a breakthrough treatment in the United States. A new drug is being developed that could arrest and even reverse the effects of the disease. Hayley will be a guinea pig in the trials, along with 14 other progeria kids. Although this development brings the Okines fresh hope, the news is also tinged with sadness after the death of Hayley’s best friend, an 11-year-old progeria sufferer. With every month and year so precious, the Okines now face an excruciating wait for the trials to be approved by the Federal Drugs Agency (FDA).

Having been the subject of numerous documentaries and talk shows, Hayley has become a poster child for progeria awareness. She is constantly recognised by members of the public, and her parents would not have it any other way. They attend the progeria reunion in the United States each year, building a support system with the families of other sufferers from around the world.

Whilst awaiting news on whether the drug trials will go ahead, the Okines receive a visit from a Belgian family – the Vandeweerts – who, against all odds, have two progeria children. Their son is also registered to participate in the trials, and the two families discuss their concerns about the potential dangers of the new medication. Their fears are well-founded, as so far the drug has only been used on mice, and the side effects that may occur in humans are yet to be tested. Researchers have explained that changes in patients could be obvious after just three days on the medication, and Kerry is worried that the children’s frail bodies will not be able to cope. With a series of tests taking place in the States every 16 weeks, Hayley’s parents voice their fear that each time she boards the plane, she might not be
coming home again.

The film provides an intimate and revealing insight into the life of this extraordinary little girl. Hayley is more conscious of her condition than ever, and startling in her frankness. She talks fluently and willingly on camera to director James Routh, who five years ago set out to make a unique record of her tragically compressed life. Her feelings on the death of her best friend – which has brought the reality of her disease into even sharper relief –are explored, as are her mechanisms for coping with grief and fear.

Wednesday 27th February at 9:00pm on five