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This report below was taken from The Herald Plymouth website posted on the 19th March 2015 by reporter Sarah Waddington

A “BRAVE" and “inspirational" 19-year-old who was born with cystic fibrosis died just weeks after being put on the transplant list.

“Beautiful" Chelsea Sheehan was forced to arrange her own funeral after receiving the news that she might only have months to live.

But the popular teenager put on a brave face and kept smiling until the very end, when she “couldn't fight it anymore".

Chelsea died peacefully at her home in Estover with her family on March 5.

“Just don't take life for granted because you never know what's going to happen," said her stepdad, Rikki Scullion, who has been part of Chelsea's family for 14 years.

“You have to appreciate life. We've got photos from a few weeks ago of Chelsea running around and smiling and now, just like that, she's gone."

Chelsea leaves behind her mother, Kerry, her two younger brothers, Cowen and Shay, and her partner of three years, Dene Macmillan.

Friends and family have left scores of loving messages for the 19-year-old, whose funeral was set to be held today (19/03) at Weston Mill Crematorium.

Rikki said: “She was beautiful, and although at home she would be ill and down, when she left the house she put on this happy persona for people, and that's what everyone will remember.

“I wasn't aware of just how popular she was, because we always had to deal with the other side. But she was so brave and an inspiration for people who might feel like giving up."

Over £2,000 has been raised in Chelsea's memory for the Cystic Fibrosis Trust, thanks to her friend Ben Hayden, who will be running the Plymouth Half Marathon next month. This will support other cystic fibrosis sufferers, including Chelsea's brother, 18-year-old Cowen.

Cowen was also born with the disease and has been told it is unlikely he will make it past his 25th birthday, but this prospect never prevented either two siblings living life to the full.

“Chelsea was the life and soul of the party – always giggling, always laughing," said Rikki. “She liked to drink with friends even though she wasn't supposed to and she managed to live a normal life like all teenagers should do.

“But the main thing is how brave she was. She had to take over 40 pills a day, with physio in the morning and in the evening. She was in and out of hospital all the time. Every time she wanted to eat something she had to take 10 pills."

He added: “When I met Kerry [Chelsea's mum] I knew nothing about cystic fibrosis, but I knew it was too much for just one person to deal with on their own and I knew I'd be with her all the way through it.

“Kerry lived in the hospital for three months trying to find out what was wrong with her daughter, but that's just what you do as a parent. She is one of the strongest people you will ever meet."

By the time Chelsea was diagnosed, her mother was already pregnant with her second child, and Cowen was also born with the incurable disease.

“There's something like a 20 million to one chance that could happen," explained Rikki. “I've been tested and I'm not a carrier – that's why we had Shay, to have a healthy child."

He added: “Chelsea passed away because there aren't enough donors. She went into hospital with two collapsed lungs and went in for an operation to inflate one of them, which wasn't as successful as we hoped it would be.

“All of her arteries and veins had collapsed after years of taking medicine, and she couldn't breathe without oxygen and couldn't go without morphine.

“She made the decision at about 2am in the morning two days before she passed, as she didn't want to do it anymore. When she was in hospital she was scared to go to sleep in case she passed away without saying goodbye.

“They brought her home and that was it, she passed away within 24 hours. She made that decision herself and she was very brave. She was so tired and run down, she couldn't fight it anymore. Dene was sat holding her hand when she died. Most blokes would run a mile, but he was there to the end and I take my hat off to him.

“I would like to thank Chelsea's nurses, Kath and Deirdre, and the rest of the cystic fibrosis team, plus St Luke's who helped us at the end. Also Chelsea's friends Michelle Smalley and Julie Cox, who had known her since she was born and helped nurse her through the last few nights."

At her funeral Rikki planned to read a touching poem both he and Chelsea had chosen. She had also picked Beyonce's song 'I Was Here' to be played alongside a slideshow of photos.

On Sunday Dene's football team, Ernesettle FC, will be holding a tribute match and have set up the 'Chelsea Sheehan Cup', to be played for each year from now.

Rikki said: “What I have learnt from Chelsea's journey is enjoy every moment of every day, enjoy your health, friends and loved ones, and let's not bicker over silly things or take each other for granted. Enjoy life. “We loved Chelsea in life, let's not forget her in death."

Facts

Cystic fibrosis (CF) is an inherited disease caused by a faulty gene which controls the movement of salt and water in and out of your cells.

The average life expectancy for someone with CF is 40.

The disease causes the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food.

Around one in 2,500 babies are born with the condition in the UK. All newborn babies are now tested for cystic fibrosis.

If you have two parents who are both carriers of the faulty gene, there is a one in four chance they will have a baby with CF. Parents often don't know they are carriers until their baby is diagnosed.

More than 2.5 million people in the UK carry the faulty gene, which is around one in 25 of the population.

One in three people with cystic fibrosis die on the transplant waiting list. There is currently no cure for the condition.

For more information and to find out how to become a donor visit www.cysticfibrosis.org.uk/

New study

The number of people living with cystic fibrosis (CF) into adulthood in the UK is expected to increase dramatically by 2025, prompting calls for the development of adult cystic fibrosis services to meet the demand.

In the first study of its kind, published in the European Respiratory Journal today,(19 March 2015) researchers have provided forecasts for the number of adults living with the disease in 34 different European countries.

Within the six countries with the most reliable data, the UK and the Netherlands are expected to see the largest rises with 79.3 per cent and 96.1 per cent increases respectively.

People living with CF have previously had low life expectancy, but improvements in treatments and care in the last three decades have led to an increase in survival with almost all children now living to around 40 years.

Professor Stuart Elborn, an author of the study from Queen's University Belfast, UK said: "The estimations we have made show very positive news for cystic fibrosis patients as the average survival age is increasing.

"We are now concerned that there are insufficient specialist centres to provide optimal care to adults with the disease. It is crucial that we take note of these early predictions and adapt the NHS to this change."

Link to: http://www.plymouthherald.co.uk/Inspirational-cystic-fibrosis-sufferer-Chelsea/story-26199522-detail/story.html