Shropshire Star Toy Appeal: Harry's memory lives on

Just seven years old, the youngster from Shrewsbury demonstrated a wisdom beyond his tender years.

A helicopter, barbecue, and disco was laid on, and the event was lined up for the last day before his school broke up for the summer holidays in July last year. Tragically, Harry would die that very day, but the party went ahead anyway, as a celebration of his life.

"He was so brave," says his mother Sally, who was headteacher of St Mary's CE Primary School in Shawbury at the time.

"He didn't complain, he was so cheerful and positive that we wanted to carry on in his memory."

In that vein, Sally decided to give up her job, look after her other son Eric, 10, and set up a charity in Harry's memory.

The Harry Johnson Trust was formed to provide support for children who are being treated for cancer at Telford's Princess Royal Hospital. At the moment it is helping about 100 children across Shropshire and Mid Wales.

The charity, which was formed a year ago, provides small treats for the children, be it trips to the cinema or short-break holidays.

It is also one of the charities that will benefit from this year's Shropshire Star and Storage King Christmas Toy Appeal, and Sally urged people in the county to give generously.

The Shropshire Star and Storage King Christmas Toy Appeal is asking readers to donate new toys and games, which will be distributed to youngsters who might be having a difficult time this Christmas.

The donations will be distributed between the Harry Johnson Trust, Hope House Children's Hospice in Oswestry, the Shrewsbury and Telford Hospital Trust, Telford & Wrekin and Shropshire Council children's services, Climbing Out which supports young people who have suffered life-changing injuries, and Parents Opening Doors which supports children with disabilities.

To support the appeal, please drop off your toys and games at one of the following collection points:

Telford:

• Shropshire Star, Ketley Business Park, Waterloo Road, Ketley

• Telford & Wrekin Council, Southwater One, Southwater Square, Telford

Shrewsbury:

• Shropshire Star, 7 Bellstone

• Toys R Us, Meole Brace Business Park, Hereford Way

• Storage King, Archers Way, Battlefield Enterprise Park

Oswestry:

• Shropshire Star, 14 Salop Road, Oswestry

To follow the latest news on the toy appeal, visit shropshirestar.com/toy-appeal

"It can make such a difference to them," she says. "The hospital is fantastic, they have lots of toys that they can play with in the communal areas, and there are play leaders who help keep them entertained. But it means so much to be able to give them something they can take home with them."

She adds that Christmas can be a very financially challenging time for families when a child has been diagnosed with a condition like cancer.

"One of the parents will usually have to give up work, or if they are a single parent they will have to give up their job," she says. "This can make it very difficult for parents to give their children the treats that other children have."

Sally, 43, recalls the Sunday when Harry told her he was suffering from stomach ache.

"We didn't think much of it, there was a tummy bug going around at the time, and we thought he had just caught that," she recalls.

"He was still running around, and wanted to go to school. But then his nan noticed how pale he looked compared to the other children, and he also seemed to be tired a lot, so we decided to take him to his doctor."

It was the worst news any mother could hear.

"The doctor felt his stomach and said there was a lump," says Sally. "We knew within a few hours that it was cancer."

Harry was diagnosed 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.

"I think we were prepared for it," she says. "They sent him to the Royal Shrewsbury Hospital for a scan, and we knew it was serious then, and he was later taken to the Birmingham Children's Hospital.

"We did try to stay positive for Harry, we told him the doctors and nurses would try to make him better. However, once we knew he had a rare form of childhood cancer, the doctors told us it was going to be difficult to beat."

Sally says that throughout his illness, the family decided it was best to be open with Harry, and answer any questions honestly.

"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," she says.

"We were trying for ages to find a match, but he had a rare bone marrow, it seemed to be one thing after another. I was a part-match, so I was going to be his donor, but he never went into remission."

It was the months Sally and Stephen spent at Harry's bedside in Birmingham that made them realise the need for a support charity .

"We wanted to use our experiences to help others," she says. "We give all parents who have children taken to the oncology unit one of our Harry's Hampers. When you find yourself dashing to hospital at short notice, you might forget something, you might not pack toothpaste or slippers, and the last thing you want to be doing is going out to get stuff because you want to spend as much time as possible with your child.

"Our hampers include all these little essentials which make life comfortable for the children."

The charity also provides soft fleece blankets and pillowcases.

"When a child begins to lose their hair from chemo we will give them a soft fleece pillowcase or blanket, which feels much softer on a delicate bare head than normal pillowcases," says Sally. "We have some lovely volunteers who kindly make these for us."

Another aspect of the charity's work is Harry's Holidays, where the charity arranges free vacations within Shropshire for children who have been having a difficult time during treatment, or have been diagnosed as terminal. A number of providers of self-catering holidays in the county have offered their services free of charge, enabling the youngsters and their families to take a break.

"We wanted to take Harry away on a holiday, do day trips, visit places, we wanted to do so much," she says. "But for a lot of children suffering from cancer, it is difficult for them to go away because they cannot be far from the hospital.

"Families still want to spend lots of time together, but don't want to go far away. Harry's Holidays allows them to do that, to have a break and do the normal things that families do together. I allows them to forget about their condition for a bit, without leaving Shropshire."

The charity also arranges special days out for youngsters, be it trips to the bowling alley or cinema.

"We provide vouchers for local restaurants and places to visit so children can spend time with those they love," she says.

Sally says the issue about what to do with a child's clothes once they have died is also a sensitive one, and it was here that she had the idea of creating Harry's Hugs.

"The parents don't usually want to throw the child's clothes away, it seems so final," she says.

"We will put parents in touch with people who can make a patchwork quilt or memory bear from the favourite clothes of their child if they sadly pass away from cancer.

"Parents will be asked to arrange to have this done themselves but we will provide them with details of those who can help them and we will cover the cost of making the quilt or bear."

In the charity's first year, the Harry Johnson Trust has raised £65,000 for children in Shropshire and Mid Wales, which Sally says is more than she had ever expected.

"At the start we were hoping to raise about £5,000," she says.

"The things we do don't actually cost much, but they make all the difference to the children and their families."

And so will the toys that readers donate to the Shropshire Star and Storage King Toy Appeal.

"We cater for children from babies to the age of 18, girls and boys, anything you give will be great," she says.

"Board games like snakes and ladders and ludo, Dollies for girls, Lego, cars, anything will be greatly appreciated."

* For details on The Harry Johnson Trust see the website www.theharryjohnsontrust.co.uk