COURAGEOUS Hayley Okines' continuing battle with rare aging disease Progeria is to be shown in a TV documentary on Channel 5 next week. The programme, which is based on ten year old Hayley's treatment in Boston, is part of Channel five's series of 'Extraordinary People,' called 'Hope for Hayley' and will be broadcast on 27th February at 9pm.
Hayley, a pupil at Sidley CP School, has been taking part in a new drug's trial for almost a year.
She has made three trips to Boston for treatment and is due to make her fourth trip in May.
Hayley's Mum Kerry said that whilst there is a glimmer of hope, as there are definite small signs of improvement, both she and Hayley's Dad Mark had hoped for more.
She said: "We haven't really seen a great improvement, the Doctors were talking of seeing a change within three days, but the only improvement that we've seen is that her skin seems a lot more supple and she's got some hair on her arms, which are very light but you can just see them. She's grown about three and a half centimetres and put on a tiny little bit of weight but apart from that we don't know what the drug's doing inside to the cells and what it's doing inside her body."
Hayley's parent's are hoping that the return trip to Boston in May will give them some much needed answers, though not before Hayley has been subjected to a barrage of tests.
Kerry said: "It will be the full tests from head to foot and then at the end of the week they will give us an evaluation of their findings."
Kerry explained how this is done. She said: " When Hayley was first assessed for the trials, the Doctor's got a 'baseline' whereby she was tested before she started the drug.These included checking her bone density, her height, weight, teeth, eyes, everything. These same tests will now be re-done and compared with the previous results".
The tests take just over a week to complete which Kerry describes as being, "quite intense and hard work."
Once they have the results to the tests Hayley will continue to take the drug for another year in order to complete the full two year trial.
Kerry added: "What happens at the end of the two years will depend on what they find."
She said Hayley had suffered some difficult side effects but was remaining positive and brave.
When asked what she thought of her new drug Hayley said: "I like my new drug because I am taller."
Hayley's treatment is funded by Progeria Research based in the United States but Kerry and Mark still have to fund Mark and their Son Lewis's airfare and accommodation in order for them to accompany Kerry and Hayley on the trips to Boston.
Kerry said: "Progeria Research identified the gene that causes the diseases and they came across this potential cure. They need two million dollars for the trial which they haven't quite reached."
Hayley now has her own website for those who would like to share her progress or make a donation: www.hayleyspage.com