Beads of Courage mark legacy of Shropshire youngster Harry Johnson

Harry, of Vennington, near Shrewsbury, died two years ago this month after a nine-month fight with the disease. He was just seven.

The Harry Johnson Trust was set up by parents Sally and Stephen, concentrating on helping youngsters and their families who are going through the experience of childhood cancer.

Beads of Courage provide a physical journal for a child going through treatment. It allows them to tell their story using colourful beads that are used as meaningful symbols of courage that commemorate different milestones such as blood transfusions, bone marrow transplants and hospital stays.

Sally and Stephen are sponsoring the programme at Telford's Princess Royal Hospital. They say the system of beads helped Harry as he went through his treatment and it is bringing them great comfort to feel they are now helping others.

Two years after his death, Sally hopes the Trust will continue into the future. She said: "It is Harry's way of making a difference and something I am very proud of."

In those two years Harry has helped dozens of other children who have received treatment at the oncology department at the Princess Royal Hospital in Telford.

Harry was just seven years old when he died on July 18, 2014, following a nine-month fight with double hit non-hodgkins lymphoma.

Since his death, his parents, Sally, a teacher and Stephen who farms at Vennington, have thrown their weight behind a trust that they established in their son's name.

And to date they have raised a huge £100,000, all of which is being used to make the lives of children suffering from cancer that bit more comfortable.

They have provided holidays and days out, paid for special pillows which will help the children sleep more comfortably and invested in hampers which are given to parents when their child is first diagnosed and need to have an emergency overnight stay in hospital.

They have also sponsored the Beads of Courage programme at PRH and have also paid for Harry's Hugs – patchwork quilts or memory bears made from the favourite clothes of a child – as well as treats, trips to local restaurants and toy vouchers.

The charity has funded lots of individual gifts and treats requested by the hospital and paid for equipment, games and toys for the ward.

Harry's mother Sally has visited numerous schools across the county and encouraging children to fundraise for the Trust.

She has also helped to organise or been involved in a variety of events including the recent Kids Festival held in Shrewsbury, where she donned a tutu and funny wig before racing up and down the Quarry in a bid to get festival goers to dig deep, and the Shrewsbury Food Festival where she set up three Scalextric tracks for visitors to play on. This will also be at Telfood at the end of the month.

And at the heart of it all is Harry – a boy who loved superheroes, orange and his older brother Eric.

"A friend of mine told me, when Harry was small, that he would make a difference to the world as he was such a bright boy, full of energy, kindness and ideas, and in his own way he has, just not in the way we had hoped" said Sally. "He would be so proud of us now, at what we have achieved. To think that in the two years since he died, we have set up the Trust and raised over £100,000 is amazing.

"I have tried to include in it the things Harry loved. That is why we have chosen to sponsor the Beads of Courage programme at the PRH. Harry's beads mean the absolute world to me. I don't know what I would do if I lost them. They broke once and I was devastated. But we managed to gather them up and put them back together. Harry loved his beads. Like any boy of that age he loved collecting things and the beads gave him a tangible way of seeing all the procedures he had to undergo."

The Beads of Courage programme is currently in more than 80 hospitals around the UK, and provides a physical journal for a child going through treatment. It allows them to tell their story using colourful beads which are used as meaningful symbols of courage that commemorate different milestones such as blood transfusions, bone marrow transplants, hospital stays, chemotherapy and radiotherapy treatments and build up over time into a unique record of what they have been through.

"It is great that we have been able to sponsor the programme at PRH for two years, as they meant so much to Harry," said Sally. "We have also been able to fund holidays for children, to give them memories of good times. Harry's Hugs are also a part of the Trust. When Harry died we had a bear made out of his old school uniform and it means a great deal to us so we decided, almost from the start, that we wanted to be able to provide these for other children."

Sally hopes the Trust will continue into the future bringing comfort to those children facing a daunting battle against cancer.

"It is Harry's way of making a difference and something I am very proud of," she added.

"Losing Harry is the most awful thing you could ever imagine. My arms feel empty all the time, that feeling of being lost never leaves me. I fight to hold it together every minute, even when I'm asleep.

"But I am lucky to have the most incredible family and friends who carry me through each day. The wonderful outpouring of support, generosity and kindness from them and from complete strangers who have fundraised, donated and volunteered time to The Harry Johnson Trust has made something incredibly positive come out of everything Harry suffered.

"My husband Stephen, Eric, who was nine when Harry died, and I have an incredibly close bond. We support one another each day, and seeing their faces and love every morning gets me out of bed when I sometimes feel like staying there. We will always be a family of four even though just three of us live in our house now."

• To make a donation to the Trust go to www.givey.com/theharryjohnsontrust