Inspiring People

Hayley Okines

Some of the qualities of Hayley Okines are her amazing courage, optimism and trust.

Hayley Okines is a ten year old girl who is continuing battle with rare aging disease Progeria. Her trip to America was shown on the Channel 5 series of 'Extraordinary People,' called 'Hope for Hayley' on 27th February 2008.

She has made three trips to Boston for treatment and is due to make her fourth trip very soon. Hayley's mum is very proud of her daughter and her brave attitude she is also sad that the treatment is not working. 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 will give them some much needed answers, though not before Hayley has been subjected to a barrage of tests.

Her mum 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."

Her mum explained how this is done. She said: �When Hayley was first assessed for the trials, the Doctors 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 redone 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.
Her mum 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 now has her own website for those who would like to share her progress: www.hayleyspage.com