Thank you

7 on­line friends with cys­tic fi­bro­sis fi­nally meet af­ter life-sav­ing lung trans­plants

The People - - NEWS FEATURES - By Erin Cardiff

Ge­orge Compton, 28 GE­ORGE was di­ag­nosed at 18 months and spent most of her child­hood in hos­pi­tal.

Even hold­ing a con­ver­sa­tion was a chal­lenge as hos­pi­tal ad­min­is­tra­tor Ge­orge, whose car­pen­ter hus­band Lee, 32, has been her rock – would be too breath­less to get words out.

Then, at 21, her right lung col­lapsed and she was put on the trans­plant list. But, do­ing well on drug Ka­ly­deco, she re­moved her­self against ad­vice. In Septem­ber 2014 her lungs Ash­ley Har­ris Moore, 36 ASH­LEY was born be­fore the heel prick test so was not di­ag­nosed un­til she was two.

The con­di­tion did not hold back ac­tive Ash­ley un­til, aged 14, a se­vere in­fec­tion put her on in­tra­venous an­tibi­otics.

She went to uni­ver­sity but in 2015 de­clined dra­mat­i­cally.

Des­per­ate loved ones, in­clud­ing her com­puter sci­en­tist hus­band Alas­tair, 38, launched Ash­ley’s Next Breath, to en­cour­age peo­ple to sign up as donors. Ash­ley said: “The phys­i­cal suf­fer­ing was Libby Clare, 22 DI­AG­NOSED at two, psy­chol­ogy in­tern Libby could man­age her con­di­tion rel­a­tively well.

But at nine, prob­lems be­gan when she got an in­fec­tion that slowly ate away at her lungs.

Her lung func­tion de­clined and at 16 she found her­self in hos­pi­tal more and more. But Libby pushed on, leav­ing her Cam­bridge home for the Uni­ver­sity of Southamp­ton in 2014 and go­ing In­ter­rail­ing af­ter get­ting ap­proval from doc­tors.

But a week into the trip she be­gan to give up again. Put on the trans­plant list, she got new lungs 11 months later. Her life changed in­stantly, as she was able to do all the lit­tle things that had once felt im­pos­si­ble, like blow­ing out birth­day can­dles.

The next year, she met her donor’s fam­ily af­ter letters and they re­main close.

Ge­orge, from Cob­ham, Sur­rey, said: “I’ve lived not able to breathe prop­erly. Af­ter the op I could whis­tle and blow-up bal­loons – stupid lit­tle things that meant a lot to me.” hor­ren­dous but I wouldn’t wish the emo­tional toll on any­one. Wor­ry­ing what would hap­pen to Emer­son (her baby son) if I didn’t make it was tor­ture.

“Even now, I’ll catch him get­ting ready for school and feel so grate­ful.”

Ash­ley was on a ma­chine to buy time when, thank­fully, a donor was found.

In 2015, she had a new pair of lungs and is in­debted to her donor and their fam­ily for the chance to see Emer­son, now four, grow up. Ash­ley, of South Lon­don, said: “Their self­less­ness has trans­formed my life be­yond my wildest dreams.” col­lapsed. A CT scan found she had very se­vere pneu­mo­nia. As it de­vel­oped into chest sep­sis, she was in and out of hos­pi­tal for eight months. Her med­i­cal team got her on a trial of Orkambi – a drug cam­paign­ers want made avail­able on the NHS. It let Libby grow strong enough to be con­sid­ered for a trans­plant and she had the 14-hour op in May 2016. She said: “If this buys me one more year, it’s still longer than I would’ve had. The best way I can hon­our my donor now is live my life to the full.” THIS could be seven or­di­nary women en­joy­ing an af­ter­noon of pros­ecco.

But the photo is a true pic­ture of courage – as they be­came friends while wait­ing for life­sav­ing lung trans­plants.

All born with cys­tic fi­bro­sis, Ge­orge Compton, 28, Ash­ley Har­ris Moore, 36, Libby Clare, 22, Holly van Gef­fen, 26, Sharon Brennan, 37, Char­lotte Davies, 24 and Josie Ste­wart, 25, have had their lives saved by the kind­ness of anony­mous donors.

Di­ag­nosed with the ge­netic con­di­tion as young­sters, they had a few years of good health be­fore de­clin­ing to the point where they needed new or­gans.

Holly, whose de­te­ri­o­ra­tion started aged 18 when a lung col­lapsed, said: “You try to bat­tle on as best you can and not let your con­di­tion hold you back.

“But there does come a point when you see all your peers grow­ing up, be­com­ing more in­de­pen­dent and do­ing all these adult things while you feel as if you’re re­gress­ing.”

Although all had the sup­port of fam­ily and friends, they found it was a great help to speak to some­body else who was weath­er­ing the emo­tional storm of wait­ing for a trans­plant.

Over time, they found each other through a Face­book sup­port page, even­tu­ally set­ting up a What­sapp group called Trans­plant Girls.

Josie said: “We built up such a spe­cial bond.”

But, due to strict cross-in­fec­tion rules, cys­tic fi­bro­sis pa­tients are nor­mally told not to meet in per­son un­til af­ter their op­er­a­tion.

So for years their friend­ship ex­isted only in the dig­i­tal world, where they spoke ev­ery week. At

ASH­LEY GE­ORGE HEALTHY: Ge­orge and pets af­ter op LIBBY

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