大象传媒 Scotland - 大象传媒 Scotland - Life gave him cystic fibrosis 鈥� so he gave us Jordy Deelight!

Life gave him cystic fibrosis 鈥� so he gave us Jordy Deelight!

Strong-willed and striking, Jordan McKinley is a 24-year-old drag artist and DJ from Edinburgh who refuses to let cystic fibrosis stifle his creativity.

In and out of hospital from the age of two, even then Jordy had figured out the power of drag to lessen the effects of his poor health. He learned to walk in hospital wards, draped in beads, trying on high heels, cheered on by fellow patients.

Kids often can't say 鈥榗ystic fibrosis鈥� so they often say 鈥榮ixty five roses鈥�

Jordan McKinley

Jordy has the life-shortening disorder cystic fibrosis and in a documentary about his life Jordy’s 65 Reason’s to Live, he explains charming background of the TV programme’s title.

“Children often can’t say ‘cystic fibrosis’. They often say ‘sixty-five roses’ and I have sixty-five reasons to live.”

Spending most of his youth in hospital, Jordan used to pass the time with drag

Jordan reminisces about dressing up in hospital to entertain the nurses.

People with cystic fibrosis experience a build-up of thick mucus in the lungs, digestive system and other organs, causing a range of challenging symptoms affecting the entire body. The disorder affects around 10,000 people in the UK, and sadly shortens normal life expectancy.

People with CF can鈥檛 be in the same room as each other.

Jordan McKinley

One of the biggest challenges for Jordan is connecting with other sufferers because of the risk of cross-infection.

“People with CF can’t be in the same room as each other.

“You’ve got this illness that makes you feel a certain way physically, a certain way emotionally. You’re going through all these channels – ‘I can’t do this, I can’t do that’ – you want someone to listen to that and go ‘Me too’, but they can’t.”

But Jordan has found himself a strong support network and knows when to ask for help.

"So many people are happy to drive me to appointments so, should I get bad news, they can go ‘Are you aright?’.”

Jordan’s best friend and flatmate Alannah said, “In the last couple of years he’s been like, ‘Right, no, I am really ill and I’m a lot worse than I said I was and you guys kind of need to help me with this’.”

Jordan appreciates how lucky he is to have their support.

“No one will understand what it’s like to have this, but they do try!”

This article is an update on a story originally published in April 2019.