Why no one loved is ever lost
Victoria Stevenson has thought of son Jonathan every day since his death at 18 from cancer 12 years ago. What's amazed her is how many others remember him too
Every day for the past 12 years Victoria Stevenson has thought about her youngest son Jonathan and shed a silent tear for the cruel loss of the strapping young rugby star who never got to live his dreams.
But now, for the first time since she lost the youngest of her four boys aged just 18, Victoria has found great comfort in knowing that she and her family are not the only people who remember the popular young teen.
Money continues to pour in for a memorial event which Victoria organised last September to mark what would have been Jonathan's 30th birthday.
Friends, relatives, neighbours, sporting colleagues and many more have shown how much they still care through the thousands of pounds they have donated in Jonathan's memory to aid cancer research.
As Victoria (60) watched her older boys – Colin (36), Brian (35) and Christopher (33) – celebrate turning 30 over the years, she felt as Jonathan's 30th approached in September that she should do something to mark it in a special way.
It just so happened that Belfast was to run its first half marathon on Jonathan's birthday which gave her the idea of getting a team together to run for Cancer Research UK in his memory.
His dad Wesley (62) was first to sign up even though he had never taken part in a run in his life. Other family members and friends followed and a team of 12 was entered, along with plans for a memorial fundraising barbecue.
The team ran the marathon with special T-shirts emblazoned with the message 'No-one Loved is Ever Lost', a sentiment which had struck a chord after it was expressed to the family by another mother who had lost a child.
Initially, Victoria hoped Jonathan's 30th birthday memorial day would raise £1,000.
Just last month, his rugby club in Ballynahinch presented the family with a cheque for £500 and the fund has yet to be closed, as donations keep coming in.
Victoria says: "I think at the last count we have £9,000 – every time we think of closing it, someone gives us another donation. The generosity of people has just been incredible and we can't thank everyone enough.
"It's 12 years now and everyday you think about him and you think everyone has forgotten him except us.
"We knew his friends wouldn't have forgotten him, but the way people have supported us and donated has shown us that people haven't forgotten, and it's such a comfort, words can't explain it."
Jonathan was just 16 when he was diagnosed with a very rare form of cancer.
He grew up on the family farm at Carryduff with his brothers and had a real passion for tractors.
He was a talented and up-and-coming rugby star, playing in the Under-16s and Under-18s for Ulster and Ballynahinch, and had gained a number of caps for Ulster.
Jonathan had been scouted by the Irish rugby team and just before he took ill, was excited to receive a letter inviting him to join the team's training camp.
He'd also just finished his GCSEs at Newtownbreda High School and was to start his dream job as an apprentice agricultural mechanic, working largely with his adored John Deere tractors.
And he was a member of Hillhall Young Farmers Club and socialised at events organised by the young farming community.
He kept fit, lived for his rugby, and his future looked bright.
When he started to take pains in his hips while finishing his GCSEs in May 2009, because of his active lifestyle, at first no-one was especially alarmed.
What followed was a frustrating struggle to find out what was causing the pain, which was becoming progressively more severe.
His mum says: "Jonathan was very healthy and fit and didn't smoke.
"He first said his hips were a bit sore and I thought it was because he was playing so much rugby; I thought he had strained a muscle or hurt himself training.
"Then it started to waken him at night and I thought that it should be getting better, so I took him to our GP.
"He agreed that a pain which was wakening him at night needed to be looked into and he did blood tests and arranged for an X-ray.
"We didn't do anything else for a couple of days, but it was getting worse and so we went back to the GP and there were more blood tests and some physio was organised."
Victoria started to become alarmed when she noticed a change in how Jonathan looked. She saw that he had heavy eyes and appeared to be strained.
After a month spent going back and forward to the GP, she tried to book a private consultant. As it was July, most were on holidays but she managed to get an appointment with a rheumatologist.
She says: "I just wanted anybody at that point, a specialist, to look at him. On July 14 he saw a rheumatologist, who put him through very vigorous exercises on his legs and joints and said he couldn't see anything wrong with Jonathan's hips.
"He said that good physio would sort him out.
"I actually felt at that stage that all of these doctors were looking at this big tall strapping looking young fella and thinking that I was some stupid over-protective mother."
But a mother's instinct is rarely wrong and Victoria's continued to tell her that something more serious was causing Jonathan's pain.
When the pain became so severe that Jonathan couldn't sit, stand or lie because of it, Victoria had had enough and took him to A&E in the Royal. She insisted they keep him in until they discovered what was causing his pain. But it wasn't to be that simple.
She explains: "I don't know why – and I had never done anything like this before or since – but I had written down every appointment we had and what was said, right from the first visit to the GP.
"I grabbed the book I had written in and we headed to the Royal. I gave the book to the young doctor in casualty and told her that I wasn't there on a whim and that I wanted them to keep my son in and find out what was wrong.
"She told me they could not admit him on pain alone. I told her something had to be done and after reading the book, she agreed with me.
"She spoke to her boss and again said they couldn't admit Jonathan. I must have looked so disheartened that she said she would run blood tests, which she did immediately.
"She came back to say that something had shown up in his blood and that meant she could admit him."
Over the next few days Jonathan had a number of tests, which showed his platelet levels were low.
An MRI scan then revealed the shattering news that he had a tumour in his pelvis which had been pressing on his nerves and that had caused the severe pain.
The family were numb with shock as they were told he had rhabdomyosarcoma, an extremely rare cancer that develops in the tissues.
Jonathan was moved to the City Hospital and his mum stayed with him, sleeping on the floor or in chairs at night.
She says: "We were told that the cancer was in his bone marrow and had gone all through his body and that the tumour was the secondary cancer. They never found the primary cancer.
"They were phoning America to get details of the latest treatment, but he was so ill and the disease was working so rapidly that they had to get treatment started straightaway.
"Normally they wouldn't start chemo when someone was so ill but they had to with Jonathan.
"They weren't sure if he could come through the first treatment, which was terrifying, but he actually came through it very well.
"His platelet levels started to come up and two months later he got home for a couple of afternoons."
Jonathan endured nine very tough months of intensive chemotherapy, which made him feel very ill. But there was reason for optimism when he started to show signs of improvement and after chemo, he started a course of 25 radiotherapy treatments, which he seemed to respond well to.
His mum says: "He came through it really well and was out with his friends and into the farm and did a bit of work and was starting to build up his strength again."
Sadly though, this happy period of respite was very short-lived and almost overnight, he started to deteriorate again.
He was admitted to hospital and it was discovered the cancer had now spread to his arms and bones.
While in the City Hospital, the teenager was further shattered when paralysis set in and left him with no feeling from the waist down. It was caused by a compression on his spinal cord.
Victoria adds: "That was the worst pain he had. It was absolutely horrendous and they started emergency radiotherapy, which reduced the compression on his spine, but he never got the feeling back.
"Shortly after, they tried chemo again but it wasn't working and we were asked if we wanted him to stay in hospital or take him home."
That was mid August 2001 – just over a year after Jonathan first took ill – and mercifully he enjoyed a few quality weeks with his family and even felt well enough to organise a barbecue for family and friends.
His 18th birthday – which also happened to be his dad's 50th – was coming up on September 22 and he was adamant that there should be a joint party to celebrate.
Sadly, as the big day grew closer, his health again started to deteriorate and he was too ill to leave his bed on his birthday.
Victoria says: "After that, he just started to sleep a bit longer every day and on October 3 he passed away.
"He knew he was going to die and he accepted it better than I could, or a lot of adults I know would have.
"Jonathan was brought up to go to church and he made his peace with God. It's been a hard road since then to now.
"Two of our sons have since got married and we have six grandchildren now who all know about their uncle Jonathan and talk about him.
"We have photos of him everywhere and we talk about him. He had a great sense of humour.
"At 16 he was just coming out of childhood and going into adulthood. He was just starting out on life. When he was paralysed, he told me he would sit and think about what it would be like to run onto the rugby pitch and hear all the cheers going up. It just seems so cruel.
"I know we are not alone; a lot of people have gone through it."