Shropshire family launches trust in memory of Harry, 7
Sally Johnson is a mother of two boys, aged seven and nine. But while her oldest will age with each year, her youngest, Harry, will always be just seven. For he died, just six months ago from an incredibly rare form of cancer.
But while Sally and her husband Stephen mourn the loss of their wonderful little boy each day, they are determined that Harry will continue to help others.
They have formed the Harry Johnson Trust, which they will use to help other children diagnosed with terminal cancer.
Non-Hodgkins lymphoma is an uncommon cancer that develops in the lymphatic system, a network of vessels and glands, which
is part of the immune system.
Clear fluid called lymph, containing infection-fighting white blood cells known as lymphocytes, flows through the lymphatic vessels.
In non-Hodgkins lymphoma, the affected lymphocytes start to multiply in an abnormal way and begin to collect in certain parts of the lymphatic system. The affected lymphocytes lose their infection-fighting properties.
Donations to the Harry Johnson Trust can be made by visiting www.givey.com/theharryjohnsontrust or for more details visit www.theharryjohnsontrust.co.uk
Sally, a primary school headteacher, and Stephen, who runs a dairy farm in Vennington, near Shrewsbury, are busy setting up the trust as well as Harry's hampers, Harry's holidays and Harry's hugs to help other county families whose children have childhood cancer.
Harry was diagnosed in October 2013 with double hit non-Hodgkin's lymphoma, a cancer so rare that at that time only three other children in the world had the same diagnosis.
Sally said: "Harry was not really showing any major symptoms. He said he had a tummy ache but he was not in any actual pain and it did not stop him wanting to go to school.
"We thought he was just coming down with something. But then my mother-in-law went to see him in the school play and he looked very pale compared to the other children.
"So I took him to the GP. The doctor there felt his stomach and said he could feel something and that he was sending us to the hospital straight away. I could tell it was something serious and it crossed my mind that it could be cancer."
Four hours later at 9.30pm Harry had been scanned and X-rayed at the Royal Shrewsbury Hospital and by 11.30pm the family was told the devastating news. Doctors believed it to be non-Hodgkin's lymphoma.
"We knew we had to be strong for Harry. And we told him the truth every step of the way. If he asked us a question we answered it as best we could. He was a bright boy and we couldn't not let him know what he wanted," said Sally.
The family was moved to Birmingham Children's Hospital, where it was discovered that Harry was suffering from double hit non-Hodgkin's lymphoma.
"They said there and then that it would be difficult to treat," said Sally. "They said the only way to give Harry a chance was a bone marrow transplant, but you can't have that until you are in remission. And Harry had a very bone marrow type. I was a half match but it did seem everything was stacked against us. First they told us it was cancer, then it was a very rare cancer, then he needed a bone marrow transplant and then that he had a very rare type. It was one thing after another. But he fought and fought. He was so brave."
Harry's family was to spend the next few months at his bedside in Birmingham as he underwent gruelling chemotherapy with only the occasional visit home. His brother, nine-year-old Eric, was incredibly brave during Harry's treatment despite rarely seeing his mother who was spending all her time at the hospital.
Months later Harry was moved back to the RSH for his treatment to continue and asked if he could have a huge party with his school friends, who he missed desperately.
Sally, 42, and Stephen, 45, set about organising the event, which would take place on the last day of term.
But sadly Harry died on the day itself, although the party went ahead as a celebration of his life, complete with a flying visit from a helicopter from RAF Shawbury.
"To be fair, the trust keeps me busy," said Sally.
"Without it I would sit and think about what has happened. If I did nothing I would get in a state about it.
"I am doing something positive, so something positive will come out of it."
She added:"Harry was a very focused boy, he was always telling me who he was going to marry, what he would do on the farm, all the plans he had.
"He would have been so proud of what we have managed to do." Through the trust, the family of a child diagnosed with a form of childhood cancer and referred to Telford's Princess Royal Hospital will be provided with a little box, a Harry's hamper, full of useful everyday items that families may have forgotten in their and hurry to pack a bag for hospital such as a note pad, sweets and toothpaste.
The trust will also pay for a child given a terminal diagnosis and their immediate family to have a holiday in Shropshire.
Sally said:"In the last month we wanted to take Harry away on a holiday, do day trips, visit places, we wanted to do so much. But the holidays on offer were far away on the coast and we needed to be close to the hospital in case something happened.
"So we have teamed up with some local holiday companies and are able to offer holidays in Shropshire. Between five and 10 children are diagnosed each year locally."
She added: "The trust is about everything that Harry was, not letting that be forgotten and using that to help other people."
For details on The Harry Johnson Trust visit www.theharryjohnsontrust.co.uk
