Tuesday, 20 August 2019
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.
14 August 2019
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