Published: 15:00, 22 October 2014 |
Updated: 16:18, 22 October 2014
Today, you could help save the life of a Faversham teenager with a click of a button.
This beautiful, brave, young woman may look completely healthy from the outside, but an “invisible disease” is gradually destroying her 19-year-old body.
Diagnosed with Cystic Fibrosis (CF) at 16 weeks old, Roisin Kelleher of Whitstable Road has faced a daily battle with this devastating condition which affects just 9,000 people in the UK.
Today, you have the chance to join the campaign Breathe Hope for Roisin and help her be the first person in the UK to receive life-saving treatment.
After she was diagnosed with pulmonary hypertension (PH) in July, her health rapidly and suddenly declined – there is just one other person in Britain that has both CF and PH and simple, everyday tasks we take for granted are now like climbing Everest for Roisin.
Her health has taken a grip of her once-normal life – activities most 19-year-old’s enjoy such as clubbing, clothes shopping, their first holiday without parents, are all now out of reach for Roisin.
Just walking from the kitchen to the sofa leaves her breathless and her days are now focused around when she needs to take her piles of medication that have become her lifeline.
She is constantly being hospitalised and as a result, has missed most of the last two years at Queen Elizabeth’s Grammar School – shattering her dreams of going to university.
In a life-changing moment, doctors have suggested that Roisin is placed on the waiting list for a double lung transplant, a suggestion Roisin describes as like “being shot” and like “signing my own death warrant.”
Throughout all of this, Roisin remains optimistic.
In a desperate search for alternatives, her mother Anntoinette has discovered a miraculous treatment in the Dominican Republic from doctors in Florida, which has transformed the lives of people with CF – no hospitals, no intravenous medication, no breathlessness – the chance of a real, normal life.
Adult stem cell treatment heals the damaged lung tissues by harvesting healthy cells from the patient’s bone marrow and that of a genetic relative who does not suffer from CF.
They mix the two, educating and activating them to become lung cells, then putting these new stem cells back into the patient using an intravenous line.
The results speak for themselves.
The only problem? The trip and treatment would cost at least £55,000 and Roisin desperately needs YOUR help to raise that money before it’s too late.
Roisin talked exclusively to the Faversham News about her journey so far.
She said: “The idea of a transplant is fantastic because I’d be able to breathe properly and it could change my life completely.
“But I have known so many people who have died waiting on the list so it is so scary to be told you’re about to go on it.
“I know one girl whose life has changed drastically – she can now go on holiday, go to university, she’s doing great. But that’s lucky. One in three die waiting on that list. It’s a huge thing to be told you’re going on it. I cried all the way home from the hospital. How do you get your head around that?”
Roisin believes that there are many others with a greater need than her and she says she has the “gift of time that many others don’t have”, which is why the idea of the stem cell treatment is appealing.
Anntoinette said: “Roisin is very passionate about giving others the chance on the donor list. But it is scary to be on that list.
“You live with the everyday struggle but you’re very sensitive and aware of other peoples’ struggles. As a mother, my heart goes out to the parents of children who have died.
“It is an incurable condition and the average age of survival is 37, but a lot of young people are still dying from CF long before they reach this age.”
They have been following the stories of many of the stem cell treatment patients and Angelo Di Stefano’s blog about his journey has given Roisin a glimmer of hope.
He was told he was going to die in 2011 but after undergoing the stem cell treatment, he hasn’t been admitted to hospital once and no longer uses intravenous antibiotics.
Roisin said: “He has gone from being on death’s door to being able to carry his shopping and live a normal life. He’s still on oxygen but he’s getting better every day.
“It’s incredibly exciting for me that I could be next.”
Her mum calls her “one in a million” and Roisin replies: “I wish it was in a better way, like winning the lottery or something, but hey ho!”
This is a perfect example of how they are constantly making light of their heartbreaking circumstances, always laughing and joking as they say, “if we didn’t laugh, we’d cry.”
Join this campaign to Breathe Hope for Roisin. Visit: www.facebook.com/breathehopeforroisin or Twitter page @Hope_for_Roisin or alternatively, go straight to her fundraising page: www.gofundme.com/breathehope
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