New CF drug hope
For the special loved one in her life and all the other children who are born into this world with life-limiting illness cystic fibrosis, Cambuslang mum June Cochrane has 65 roses tattooed on her thigh. Because, when you’re a toddler learning to walk and talk while you’re spending months on end on a children’s ward, 65 roses is easier to say than cystic fibrosis.
It’s nearly 14 years since someone very close to June was diagnosed with genetic condition cystic fibrosis at the age of two.
June is fiercely protective of teenager Sophie (not her real name) as both struggle pyschologically to contend with this new reality that the longawaited arrival of wonder drug Orkami means she’s no longer destined to die young.
Teacher June left behind a marriage and a life of working abroad to return home to the Isle of Bute in the desperate hope of getting to the root of Sophie’s seemingly endless chest infections and general malaise.
But on the island, doctors palmed June off, diagnosing common cold symptoms and dismissing her “over-protective” concerns.
Sophie seemd to have a healthy appetite, and yet was losing weight at an alarming rate.
When on her second birthday, Sophie was so sick that she wouldn’t touch any of her presents, June made the journey by public transport across the Firth of Clyde and on to Paisley, where doctors at the Royal Alexandra Hospital carried out a sweat test which confirmed their fears. Sophie had cystic fibrosis – a double mutation and one of the most severe and aggressive forms of the condition.
“She was a really poorly wee girl when we got there. Had she been left for much longer, her outcome would not have been the same, “said June.
“They picked it up straight away. They saw that she was seriously malnourished, She had been eating and eating, but was not getting anything from the food. She wasn’t able to keep food down. People who have cystic fibrosis do not have panreatic enzymes and she was being sick with the mucus. She had muscle wastage in her
legs. She wasn’t walking the way you would expect for her age.”
Sophie spent several months in hospital under the watchful eye of consultant paediatrician Dr Greg Hunt, during which time June travelled between Paisley and Bute, where best friend Claire Webster was taking care of June’s daughter and trying to make life as normal as possible during her mum’s spells of absence.
The feeling of isolation exprienced by people with cystic fibrosis and their carers is exacerbated and made all the more cruel by the fact that those who have the condition can never meet – because their lungs breed bacteria. And cross-infection with even a common cold virus could prove catastrophic.
Hungry for information about the toddler’s condition, June took to Facebook to connect with parents and carers of other children and adults who have cystic fibrosis.
It was then she came into contact with the mum of the only other person she’d known in life to have had cystic fibrosis. It was the mum of Stacey Gorman, who was to become a mentor to June and a rock she could turn to in times of need.
And because their illness puts them at risk of crosscontamination, Stacey would become the best friend and confidant Sophie would never be allowed to meet.
June explained: “Stacey was in the year above me at school. Everyone knew she was the child with cystic fibrosis. Everyone was aware she was the only person on the island with the condition.
“She kind of just disappeared because her mum had to move her to Helensburgh because hospital services were much better there. We lost contact for many years.”
It was during a long stay in hospital at the age of seven that June set Sophie up with a Facebook account to allow her to reach out to other people with CF.
“We communicated with Stacey through Facebook, texts and calls,” explained June.
“She was always there. I like to call her a mentor. She’d say: ‘this is the mediation to expect,’ or ‘they will do this procedure.’
“Stacey and Sophie have spent their whole life being in hospital. No matter how sick Stacey was, she would always be there for us to offer support, encouragement and a laugh. They’d swap pictures of hospital meals, saying: ‘How bad was your lunch?!’”
To the delight of June and Sophie, Stacey met and fell in love with husband-to-be Michael Gorman.
The pair adored each other, and he was determined that she experienced and saw everything she wished for, including annual trips to the USA.
In spite of her postive outlook on life, Stacey’s condition deteriorated.
“Two days before she died, she was on BBC News talking about palliative care in the new Queen Elizabeth II Hospital and explaining not to be scared,” continued June.
“It was just before Christmas. Her family managed to keep her at home for Christmas. It was her favourite time of year.
“The last message I got from her was a thumbs up.”
When Stacey passed away in 2017, aged 33, June says that for her, “it was like watching what was to come.” Now approaching 16, hospital stays are still a huge part of Sophie and June’s lives.
But those stays, and the team they refer to as their “hospital family,” have also brought joy to their lives.
It was in the corridors and waiting rooms of the QEII Hospital that June met Colin Cochrane, whose son had been admitted after breaking his leg.
The couple, who set up home in Halfway with their five children, were married in Rutherglen Town Hall in 2016.
Over the past 11 years, June and her many supporters have raised in excess of £20,000 towards medical trials.
In support of her fundraising effort, 65 people came off the street and into a tattoo parlour to receive the inscription of one of 65 roses in exchange for a donation.
MSP James Kelly was among those who championed June’s cause to make Okrambi available in Scotland.
He told The Reformer: “The work of people like June Cochrane has been absolutely essential in the many years of campaigning it has taken to get to this point.
“I and my colleagues have consistently raised the issue of Okrambi and other essential medication with the government for a number of years but we would never have been successful without people like June sharing their stories
“I am delighted that all her hard work has paid off and thanks to her and many other concerned individuals the thousands of people living with CF in Scotland will see their quality of life improve drastically”
Now that her prayers have been answered and Orkami is finally going to be made available to Sophie and 350 other people in Scotland who will benefit, June called time on her fundraising with a celebration for families at the County Inn in Cambuslang last week. Although entry to the fun day was free of charge, supporters dug deep to raise a further £300 for the Butterfly Trust in Stacey’s memory.
“A child living today with this mediation could double their life expectancy, and that is a huge deal,” said June, 34, who descrbes both Stacey and Sophie as “an inspiration.”
“It is the first time all MSPs came together and fought for the same cause. To me that is extraordinary.”