Tuesday, 20 August 2019

‘Fairy’ festival in support of little girl with cystic fibrosis

‘Fairy’ festival in support of little girl with cystic fibrosis

ABOUT 250 people attended a fund-raising event in support of a little girl with cystic fibrosis.

The Henley Fairy Festival was held at Shiplake Memorial Hall on Sunday in aid of one-year-old Darcey Hope, from Selby in North Yorkshire.

It was organised by Janine Brockway, 45, who met Darcey’s father online, and raised £204. Darcey was born with the rare genetic condition and her family is trying to raise £104,000 a year for a drug called Orkambi that would help extend her life.

Ms Brockway, from Waltham St Lawrence, said: “This was just my way of helping. I have become friends with the family having met them on Facebook and chatted over the phone a couple of times. There are lots of families trying to make this drug available on the NHS. Darcey’s family have even written to the Queen.”

There is a petition calling for Orkambi to be made available to families, which has reached 100,000 signatures so the issue will be discussed in Parliament.

Ms Brockway said the event was a success. “Everyone had a really good time and I even joined in with the dancing,” she said.

“Once it got going I was able to relax and have a bit of fun.”

For children, there was a bouncy castle and a competition for the best-dressed fairy.

Other attractions included a raffle, meditation classes, mediums and art workshops as well as vegan food, pizza and ice cream.

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