An Irish man with a rare form of cancer has raised over €120,000 in a race against time to avail of private drugs and treatments not yet available on the NHS.
Scott Stinson, from Co Down, has received several generous donations from family, friends and strangers in just two weeks, as he aims to raise over €135,000 for vital treatment.
Belfast Live reports that the 25-year-old research chemist was diagnosed with bone cancer after developing a pain in his shoulder which he thought was gym or football related.
The PhD student was studying Chemistry Nanotechnology at St. Andrew's in Scotland, when he got the diagnosis which resulted in the amputation of his right arm.
He spoke to Belfast Live of the emotional rollercoaster he has been on and how the rare disease has affected his life.
He said: "Growing up I was pretty healthy. The only thing I had was hay fever really.
"Around Christmas 2017 I felt a bit of discomfort in my shoulder and I initially thought I had done something to it while at the gym or playing football.
"A month later it did get worse so I went to my GP who then sent me to physio. The physiotherapist couldn't really see what was wrong so sent me on to a shoulder specialist."
Scott was mis-diagnosed by shoulder specialists who diagnosed his unbearable pain as frozen shoulder syndrome.
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It was only after his mum, Jill, saw a photo of her son in Edinburgh, did alarm bells begin to ring for the Dundrum family.
He added: "The shoulder specialist didn't even do any scans and give me a steroid injection into my shoulder.
"This give me peace of mind for a week because I thought, 'oh right this will get better now', and when the pain got so bad I knew something was wrong.
"I thought it was something that would go away.
"My mum then saw a photo of me and my girlfriend on Facebook and she told me I looked too ill and to come home.
"So, I flew home to Belfast in March and had an X-Ray and MRI taken and they were able to then see that there was something on my shoulder bone.
"I had a bone biopsy a few weeks later and then was given the diagnosis of Osteosarcoma of my right humorous but that these sort of things were treatable and that usually you have two chemo cycles first and then have an operation which removes the affected part of the bone and you get a prosthetic bone.
"So this was the plan up until it was discovered that the chemo wasn't working and the tumour was actually spreading into my chest and my armpit.
"I went to Birmingham to the Royal Orthopaedic Hospital and had the tumour removed and my arm and shoulder amputated."
Osteosarcoma is considered an "orphan disease" whose rarity means there is a lack of a market large enough to gain support and resources for discovering treatments for it.
It usually develops in growing bones and is most common in teenagers and young adults.
Any bone in the body can be affected, but the most common sites are the arms or legs, particularly around the knee joint.
One year after his amputation, it was discovered that Scott's cancer had made its way to his lungs and he was advised that any further treatment would be simply life-extending.
The "devastated" budding scientist had been researching drug delivery systems which could be used in years to come for treatment of cancer.
He said: "I know I am not a doctor but I can understand cause and effect and what will and won't work with my condition.
"I have studied for so long and worked pretty hard to become a chemist and a scientist but unfortunately I haven't be able to put it to much use just yet.
"It is a case of having a very rare disease that doesn't really have the numbers to make people stand up and notice that something needs done about it. It's been a crazy year and I feel like I have lived three or four years in the past twelve months."
A GoFundMe page was set up by Scott's mum, with a target of £120,000 to help Scott access life saving drugs not available on the NHS.
Through his own personal research, and others advice, he has decided to avail of immunotherapy.
He said: "I have been in touch with patients in America and in Europe and there is other treatments out there it just isn't available in the UK.
"Especially in Northern Ireland at the moment, we don't have a working government so nothing is able to progress.
"These treatment packages cost up to £55,000 at a time with an indefinite monthly follow up care of up to £4,000, as well as travel and accommodation costs incurred during treatment visits.
"Time is not on my side and I will be hoping to raise enough funds to begin the first round of treatment by the end of April.
"A patient in America is receiving immunotherapy and she's now in remission after a year and she was in the exact same situation that I am now in.
"If I get this overseas treatment it will be a case of flying every few months for an infusion. Hopefully then I will be able to get the drug here in the UK.
"If I can show that the drugs are helping me and there is reasons for it to be licensed on an individual basis then I don't see why I can't be given the drug here."
Scott told Belfast Live that the fundraising page has been a huge help to his family.
With nearly 3,000 donations made in 19 days, the Stinsons have found strength through the kind words of others through the site.
He said: "The Go Fund Me page has opened up a lot of doors for me. It is fantastic. The support has been unreal and very humbling to see that so many people are out there wanting to help me and also the amount of people who have really good advice for me having gone through similar situations.
"They've been able to point me in the right direction of people who can help me. It has been fantastic and really good for my family as well for them to follow the amount of support I am getting.
"I have never been one to lie around, you can either do that or get up and get on with it, and that's what I am doing.
"It has been so good to see that there are options there for me and still hope.
"When there is something out there that can be done, I don't see why I would sit here and do nothing about it."
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Scott praised his family and in particular his girlfriend Becky for their immense support.
Becky, a costume design student has moved to Newcastle with Scott and placed her masters studies on hold for now, following the news.
Scott described Becky as "fantastic."
"I don't know how I would deal without her. She is constantly making me laugh and we are really happy most days," he said.
"I am walking around Tullymore most days with her and am skating so I still have my fitness which is great. It has been a very long, extended process but at the same time I have learnt quite a lot about life and what is important out of it.
"I have been able to appreciate my loved ones and the beautiful place where we live."
The next step for Scott is reaching the funds target so he can begin his journey to access treatment.
With just over €23,000 to go, he dreams of the day he can have some breathing space and not have the worries he has now.
He said: "I want to do a bit of writing and probably a bit of travelling.
"A holiday would be nice. Not having to worry about all of these heavy things would be nice.
"The cancer is always going to be there, but having a bit more breathing space would be good to have.
"Just because there is a small number of people with this disease it doesn't mean nothing should be done about them.
"I think the NHS is a fantastic institution and it has got us this far but it's the government and licensing bodies not looking into these instances fast enough."
To donate to Scott's cause or keep up to date with his journey, CLICK HERE
