Their son Arran died, aged 13, within a week of an eye test revealing he had a brain tumour.
But they, their family, and Arran’s many friends have found the best possible way of keeping his memory alive.
A charity set up in his name has already brought in £50,000 to help other sufferers and their families.
And now they are calling on people from all over Suffolk to help them raise more money, They also hope businesses will get involved.
To Steve, Alison, and their daughters Chloe, 22, and Abbie, 20, there could be no more fitting legacy for Arran.
He was the boy who busked for charity, and won hearts with his kindness and ready smile.
Before he died he had been planning to have his head shaved for Cancer Research and his Justgiving page, which they kept open after his death, made £20,000.
Now his parents, who live in Sudbury, are comforted by the thought that their beloved son is still helping others.
The charity is named Smile of Arran ... the brainwave of another family member who put together two things about him, his memorable smile and the fact he was named after the Isle of Arran.
“Because we’re from Scotland we wanted a good Scottish name for him, and Arran seemed perfect” says Alison.
Smile of Arran already has massive support around Sudbury, in north Essex where he went to school, and in Haverhill where he attended the Centre Stage drama group.
Haverhill’s Sainsbury store has made it their charity of the year, and fundraising there has included a bag-packing event which made £1,300.
In Sudbury, last year’s Big Busk saw more than 50 performers playing and singing to raise money, and another is planned for this year.
And the town’s Fat Face branch gave £1,000 from its Black Friday charity weekend.
Students at Hedingham School have also been fundraising enthusiastically in memory of their schoolmate.
Many more events have either taken place or are planned for this year.
“We want to say a massive thank-you to everyone. As a family we are so grateful for people’s support and generosity to the charity,” said Alison.
The groundswell of support for Smile of Arran has been so overwhelming they feel it is becoming more of a community cause than a family-led project.
“We wouldn’t take a lot of credit for the money raised. It’s a community charity really - we are just the focus,” says Steve. “We have a fundraising committee now with 30 members, plus another 10 of his friends on the Friends of Arran committee.”
The charity’s money is distributed in several different ways. Some goes to Clic Sargent, which helps children with cancer.
Donations are also made to the Brain Tumour Charity, which carries out research.
“We have also created our own grants committee, and in future will share money with charities that support children affected by brain tumours,” Steve added.
“And we are also supporting accommodation for families of children being treated at Addenbrookes Hospital.”
Arran’s death came as a terrible shock to his family. Although he had suffered health problems doctors had not suspected he was so seriously ill.
“He hadn’t been well for a year, with nausea in the morning, headaches, and other pains,” said Alison.
“But they thought his symptoms were due to other causes. His sore legs were put down to growing pains, the headaches to hormones, and neck ache to football injury.
“We went for an eye test because he was getting a headache every time he read, or looked at the whiteboard at school.
“The optician found pressure behind Arran’s eye and wanted us to go to hospital that day.
“But it was a Saturday and he didn’t want to go because he was going to a friend’s party, so we went on the Monday instead.”
For Arran’s family the next few days were a cruel rollercoaster of hope and reassurance followed by devastating news.
To make things even more traumatic Steve was away, working in Australia.
“At first they said they were sure it was crystals behind the eye,” said Alison. “But then an MRI scan revealed it was a tumour.
“Even so, we were told it was small. The night before Arran had his operation they showed it to him on a screen and said it was operable.
“But when they operated they found most of it had not showed up on the scan, and it was all through his brain.”
Arran was put on life support. Steve flew back from Australia and was able to get to his son’s bedside before he died.
But looking back the couple have no regrets that the tumour was not diagnosed sooner, nor that his death, though a devastating shock, came so quickly.
“Arran wouldn’t have suffered, that’s the main thing. He was spared that,” said Alison.
“The tumour was on the brain stem so even if they had found it earlier there would have been nothing they could have done.
“It was not cancerous, but because of where it was it would have been inoperable.
“I feel that in Arran’s last four years he really blossomed as an individual with his acting, singing, guitar playing, football, and charity fundraising. If we had known about the tumour that probably wouldn’t have happened. It was better we didn’t know.”
The family are members of the Catholic church in Sudbury, and Arran was confirmed the day before his opticians appointment.
“Our faith has helped us through. We have very strong faith, and so did he,” said Alison.
The charity has also spread its wings north to Arran’s namesake island where a sponsored walk is becoming an annual event.
“It’s a 63 mile walk over five days around the island. Last year it raised £3,000.
“The islanders have been so supportive. This year they have invited us to their highland games and they will pipe us round the field in our green Smile of Arran tee shirts.
“We chose green and white as the charity’s colours because they are the colours of Celtic, his favourite football team.”
Steve, who does the administration for the charity, said: “We both take comfort from the inspiration and benefit that the charity has given to so many people.
“We feel that Arran has a hand in so many charitable acts from friends and the local community but also from so many people around the country that we have never met.
“Through the charity we have met, and work with, some truly wonderful people.”
He added: “One thing we want to get over is how important it is to get children’s eyes tested. The tests are free.
“Sadly it didn’t help Arran, but it could mean life or death for someone else.”
For more information go to www.smileofarran.org.