Christina’s story: ‘This would, lit­er­ally, change lives’

The Irish Times - Tuesday - Health - - Health l Gene Technology -

In her fi­nal year study­ing sci­ence at UCD, Christina Kenny knew that she wanted to do post­grad­u­ate re­search, but was un­sure in what area. Her mother, Al­i­son, who had cys­tic fi­bro­sis (CF), ad­vised that she do some­thing that she re­ally cared about.

The pre­vi­ous year Christina (23), had done an in­tern­ship at Queen’s Univer­sity Belfast in­volv­ing re­search into CF and had loved it. She de­cided that was what she wanted to do, and she set out to find out more about her mum’s con­di­tion.

“It seemed like the per­fect fit,” re­calls Christina. “It was some­thing that I re­ally cared about, and I knew a lot about, so that’s what I did. I started a PhD in cys­tic fi­bro­sis re­search.” She started her PhD in Septem­ber 2015, but sadly her moth­erAli­son passed away on Christ­mas Day only a few short months later. She was 45.

Al­i­son’s qual­ity of life was badly af­fected by CF, but her spir­its stayed high. “I have no idea how she did it,” said Christina. “She was one of the jol­liest, most happy-go-lucky peo­ple any­one has ever met. She was a big joker, and was con­stantly tak­ing the piss out of any­thing and ev­ery­thing. It never ended.”

Af­ter her mother died, Christina went back to study two months later, but it proved to be too early. She felt her­self be­com­ing over­whelmed by her loss and de­cided to put her PhD study on pause, with about two years of it left to run.

“My mother is one of seven chil­dren, and three of them have cys­tic fi­bro­sis,” ex­plained Christina. “My mother’s brother got a trans­plant when he was around 29. He was the last per­son to be trans­planted with a cer­tain bug called Cepa­cia and he passed away af­ter the trans­plant.”

The lung trans­plants for CF stopped for peo­ple with Cepa­cia, be­cause peo­ple were dy­ing, ex­plained Christina. Then, when Al­i­son too got the bug, it meant

‘‘ If you told her that cut­ting off her left arm would im­prove her lung func­tion, she’d prob­a­bly do it

that trans­plan­ta­tion was not an op­tion for her. Fur­ther­more, she had a rare form of CF that meant she was not an ideal can­di­date for new anti-CF drugs such as Ka­ly­deco.

If Crispr had been de­vel­oped in time for Al­i­son, Chris­tine has no doubt that her moether would have wanted to try it. “If you told her that cut­ting off her left arm would im­prove her lung func­tion, she’d prob­a­bly do it.”

What does she think about the pos­si­bil­ity that Crispr could pro­vide a once-off fix for CF for life? “That would be amaz­ing. Hav­ing first-hand ex­pe­ri­ence, it would, lit­er­ally, change lives.”

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