Moving documentary on Hayley Okines

This latest film in the Channel 5 Extraordinary People series was meant to be about the results of the pioneering drug trial Hayley has been part of.

But mostly it was a celebration of incredible grit, strength, and humour from a diminutive schoolgirl never lacking for a moment in personality.

The film was made by James Routh, who built up a relationship with Hayley and the rest of the Okines family over eight years, in examining the impact of ageing disease Progeria as she grows older.

He observed her daily life, including a nervous first morning at Bexhill High School, and relaxed at home in Meadow Crescent with Kerry and Mark, Ruby and Lewis, and her friends, as well as the ordeal of hospital appointments and a trip to Boston for drug monitoring and health checks.

It was obvious to the viewer how much Hayley had to steel herself to to face the gruelling round of injections, intravenous drugs, and MRI scans that form a regular but daunting part of her treatment, her face screwed up with tension as she faced her demons head-on.

The documentary ended up a tribute to a remarkable bravery and sparkle, which Hayley herself was able to watch on Tuesday as she ate her breakfast before school.

Kerry said afterwards: "I really enjoyed it. I was a bit worried about it, that it would be a mishmash of things put together because it was supposed to be based on the results but we haven't had any results yet. I was worried that the deadline was coming up but there was still no news from America.

"So we were panicking '“ but I thought it was amazing. "She is so much more grown up now. She is so open with James Routh, because we have been working with him since Hayley was four. You can see the humour between them."

Last week the Observer reported how Hayley's dream of a UK reunion for children with Progeria had suffered setbacks due to a lack of cash and that her parents were considering taking out a personal bank loan to pay for flights, accommodation and food for youngsters and their families.

Following the documentary Kerry commented: "We have had a huge response. "It has been amazing. We had 109 messages come through, and nearly 700 in donations in just one day, which all started before the programme. Hayley completely took over Facebook, with people saying please help with the reunion.

"I am hoping... We have got to make a decision before the end of the week, but it is looking a bit more promising than it was last week '“ definitely.

"I felt so down yesterday morning I wanted to cry. It has been so stressful and we have put so much hard work into holding the reunion because we know how much it means to get those kids together. But then I thought '“ no way can we get a bank loan and maybe get into trouble, it's so stressful.

"We were looking at taking 12,000 from the bank as a personal loan '“ it's very frightening. Obviously we are still doing the fundraising, but if we can't make that monthly payment... it's really scary."

Kerry and Mark have been receiving messages saying how Hayley is an inspiration, and have been approached by an Australian TV company wanting to make their own film and offering to donate to the reunion.

"It has been lovely," she said.

"It makes it all worthwhile, though some of the comments make me cry."