A YOUNG Rostrevor woman has launched a major appeal with the hope of raising enough money for a ground-breaking vaccine which could help prolong her husband’s life.
Niamh and Luke Johnston’s world was thrown into turmoil when the 35-year-old, who is from Exmouth in Devon, was diagnosed with Stage 4 glioblastoma, an aggressive and fast-growing brain tumour.
When the couple were given the devastating news, it was outlined how Luke could have as little as a year to live.
Niamh (30), a cancer nurse specialist, is hoping to raise at least £150,000 to pay for DCVAX-L, a revolutionary new treatment.
Not yet available on the NHS, but approved in Germany and the USA and available in the UK when privately funded, this bespoke cancer vaccine is made from each patient’s own dendritic cells, which help the body’s immune system recognise and attack tumour cells.
The young couple, who married in County Down last August and have set up home in England, have one goal – the ultimate aim of helping give hope of a longer life.
Via the creation of a Justgiving.com page, donations amounting to £15,000 flooded in within the first 24 hours. The online donations now stand in excess of £53,100 – with over 1,030 people having already contributed online.
Conscious that Luke’s diagnosis comes with a bleak prognosis, as the average glioblastoma survival time is between 12 and 18 months, with only a handful of patients surviving more than five years, they are aware that DCVAX-L will give them some hope, and that his life will be extended.
If the vaccine doesn’t become an option for him, the money raised will be used for bucket list experiences.
Despite his illness, Luke has some ambitious targets planned for the next chapter and that includes starting a family, watching England win the World Cup in 2026 and, as his loved ones joke, working his way through a lifetime’s supply of Jaffa Cakes and Bourbons.
Niamh described her husband as “kind, caring and determined to beat the odds” and that he “is truly one-of-a-kind”.
And the response and support from his many friends and family has been incredible.
As part of the fundraising appeal, and with the help of their close friends Joe Hibberd, Stephen Horton and Gianni Buttice, a charity walk has also been planned.
Aptly named ‘March to the Arch’, it will set off from Exeter, close to Luke’s hometown, and head to Wembley Stadium in time for the international match between England and Italy in October.
Those participating will take on the challenge of walking an average of a marathon every day for eight days.
Niamh, who is the daughter of Kieran and Deirdre Morgan, said the support shown on both sides of the Irish Sea has been “amazing” and that she and her husband are so appreciative of everyone’s love, support and generosity.
With Luke now having daily hospital visits, she explained she is leaving much of the organisation to Joe, Stephen and Gianni so she and Luke can concentrate on his treatment. Adding that they have been overwhelmed by the help and support so far, Niamh said the care her husband has received has been exceptional.
She explained that Luke first began experiencing headaches which lasted no more than 20 seconds in December. He went to see his GP in the new year.
The shock diagnosis was followed by surgery to remove as much of the tumour as they could from his frontal lobe.
It was an incredibly quick series of events – within nine short days of seeing his doctor, Luke was at home again recovering from the complex procedure.
Once he received his stage four diagnosis some three weeks later, Luke quickly commenced chemotherapy and radiotherapy, which he undergoes on a daily basis.
Niamh said Luke’s March to the Arch is not just a walk, it’s a symbol of hope and a testament to the power of friendship and community.
She added that, with every step, the walkers will be raising awareness and funds for this ground-breaking treatment, giving her husband and other cancer patients like him a chance to fight this disease and live a full and happy life.
“We can’t speak highly enough of the care Luke has received so far”, she said. “From seeing his GP who organised a CT scan within 24 hours, to the prompt actions of the medical team in Exeter and then being followed up and having his surgery within seven days has been incredible.
“This has continued through to his oncology team who he is now receiving his treatment with in Exeter and we can’t thank them all enough.” Niamh, who works at the Royal Devon and Exeter Hospital, has also praised everyone at her workplace for the care provided, as well as thanking the team at University Hospitals Plymouth.
“The care we have had to date has been second to none, just incredible in fact and we are just so blessed to have all this so close to home,” she continued.
Knowing full well the tumour will return, Niamh said she is “so very proud” of her husband and how he has dealt with the past few months.
“We know it will come back, we just don’t know when. All we can do is hope that when it does, Luke will be fit enough to have surgery for further removal and then at that point we want the vaccine to do its job.
“We aren’t naive, and we know things aren’t great. We have had the warning shot and now we just have to come back fighting,” she added. Visit the following link – www.justgiving.com/crowdfunding/marchforourmate – if you would like to support the appeal.
