Charity remembrance event as a homage to 'family' claimed by cystic fibrosis

THEY were her new brother and sister in her new adoptive family but little did Kim Law realise that they were also united by a common bond which, tragically, would cost them their lives.

When Kim was adopted by Donna and Steven Johnston at the age of 13, she moved into the family home in Drylaw knowing that two of her new, younger, siblings, Claire and Paul, both had a potentially life-threatening genetic condition.

But never for a moment did she think that within just a few years the pair with a seemingly indestructible zest for life, would both lose their battle against cystic fibrosis - just months apart. They were, says Kim sadly, young people with everything to live for. Claire, 19, a pretty girl with flowing light brown hair and a dazzling smile had spoken often of how she wanted to be a make-up artist in Spain before marrying and having children of her own. And Paul, 18, good-looking with a love of life that belied his condition, liked to breakdance and sing: he was a born entertainer.

"It was just a cold," says Kim, now 30. "Claire caught a cold, she ended up in hospital and all of a sudden ... she didn't survive. Paul's condition was always worse than Claire's. I don't think losing Claire helped - they were so close. He died 13 weeks later.

"I suppose I never really realised just how ill they were, probably because they never let it show," she adds.

"Losing them so close together, it was such a shock."

But Kim resolved to ensure her brother and sister's remarkable appetite for life would survive. Inspired by their love of fashion, music and dance, and by their spirited determination to enjoy every moment of their lives regardless of their nightmare condition, she set about organising a major fundraising event.

It all comes together this Thursday when the Assembly Rooms in George Street become the venue for a glittering evening of fashion, style, music and dance, a celebration of Claire and Paul, which it's hoped will raise around 4000 for the Cystic Fibrosis Trust.

"It's been amazing how many people have agreed to help," Kim smiles. "I've gone to businesses that don't even know me, yet they've agreed to help put on a fashion show. It's been very touching."

Thistle Street boutiques Kakao by K and Covet, Goodstead in Rose Street and Godiva in West Port have agreed to take part, along with 21st Century Kilts and Solo Menswear. And, in a fashion coup, Kim has secured new outfits from George Street retailer Karen Millen's autumn/winter range and designers.

The show will also feature a raft of new Scottish talent including Japanese-inspired duo Kureaa Besu, Rebecca Robinson and Alessandra Meng Han Guo Designs and professional models from Manequin Model Agency.

Everyone, from make-up artist Tatiana Ashakova to sound engineers Blue Lizard Media and the bar organisers Outside Inn are giving their time and effort for free.

The event, says Kim, is just her way of paying tribute to Paul, Claire and to the rest of her adoptive family's fortitude in the face of a condition which they all refused to allow to overshadow the siblings' short lives.

It's also a chance to say "thank you" for the kindness the Johnston family showed when they threw open the doors of their home and agreed to care for Kim like one of their own.

"They adopted me when they already had five children, Stephanie, Erica, Ross and of course Claire and Paul with a life-threatening condition," recalls Kim, an administrator for energy research firm Wood Mackenzie in Semple Street. "That they did that was really incredible. I just love them all to bits.

"In return, I wanted to do something to show how much Paul and Claire meant to me - something that might also help other people like them."

Kim's natural father died from kidney disease in Belfast when she was just six. She came to Edinburgh to live with her mother but she struggled to juggle work and caring for her daughter.

Luckily Kim had forged a strong friendship with Claire and Paul's older sister, Stephanie. And, in spite of having to deal with the day-to-day care of their two youngest children's condition, Donna and Steven agreed to take her in.

But when she first arrived at their home, Kim wasn't fully aware of the serious nature of Claire and Paul's condition.

"I knew they had cystic fibrosis," she nods, "but at 13 you're not really sure what it is. I knew it was serious but never for a minute did I see what was coming."

Paul's condition was the more serious. The family had been warned his prospects were not good and that he probably wasn't healthy enough to be considered for a potentially life-saving lung transplant - the only "cure" for the debilitating genetic condition. But Claire was healthier, and hopes were high that eventually she'd receive the operation which would enable her to fulfil her dreams.

"I used to watch them take their medication and have their physiotherapy at home," recalls Kim. "My mum was amazing, she gave up work to look after them and she'd give them physiotherapy, which was hard for all of them. They were in and out of hospital a lot but at the same time when they were "well", they were fine. I certainly never thought we'd lose them.

"They definitely never let the illness stop them from having a great time and they were never ones to let it stop them doing anything. They treated it as just a way of life, they were so accepting of it."

Their condition came to a head in autumn 2007 when Claire caught a cold. Cystic fibrosis affects the lungs and the digestive system, clogging them with thick mucus - Claire couldn't fight it off and passed away on November 13.

As the family grieved for the 19-year-old Paul's condition gradually worsened and on February 8, 2008 he too lost his fight for life.

Incredibly, Kim threw herself into raising money in their memory, and in spite of having no experience in staging events organised her first fashion show fundraiser later that year, earning more than 4500 for The Butterfly Trust, which supports people in Scotland with cystic fibrosis and their families.

"It was a very emotional time. And I know it will be emotional this time too," adds Kim. "I organised a fashion show with lots of music, dance and fun because I think it's exactly what Claire and Paul would have loved.

"It would be great if people go away knowing a little bit more about cystic fibrosis. And I really want everyone to enjoy themselves - that's what Claire and Paul would want."

• The BeInspired2 Charity Fashion Show is at the Assembly Rooms on Thursday, October 28 at 7pm. Tickets cost 15 per person, available from www.beinspired2.weebly.com. Or donate through www.justgiving.com/Kim-Law

GENE DEFECT

CYSTIC Fibrosis affects around 8500 people in the UK.

It is caused by a single defective gene. The internal organs become clogged with thick sticky mucus resulting in chronic infections, inflammation in the lungs and difficulty digesting food.

Each week five babies are born with CF and three young people die.

Around half of sufferers will live for more than 38 years, although improvements in treatments mean a baby born today can live longer.

For information from the Cystic Fibrosis Trust, go to www.cftrust.org.uk, or call the helpline on 0300-373 1000.