Couple raise £130,000 in 20 years in memory of son
IN the front room at Malcolm and Barbara Lewis’s home in Nettlebed hangs a framed photograph of their
IN the front room at Malcolm and Barbara Lewis’s home in Nettlebed hangs a framed photograph of their son, Charles “Berti” Bertioli.
The picture was taken at the former Horse and Groom pub in New Street, Henley, where he would go with friends when he was in his late teens.
On the back of the frame are signatures and messages from Charles’s friends.
The photo reminds Mr and Mrs Lewis of their son, who was killed in a car crash on the A4130 near Nettlebed almost exactly 20 years ago, on January 12, 1996.
Charles, who was just 19, was a passenger in a Renault Clio which left the road, hit a tree and oveturned. Another passenger, Paul Hayward, from Cold Ash, near Newbury also died.
The tragedy happened just two years after Charles had undergone a successful kidney transplant.
Some of his own organs were used in life-saving transplant operations as he used to carry an organ donor card.
Following his death, his parents and friends set up the Charles “Berti” Bertioli Staying Alive Foundation to raise money for the renal unit at the Royal Berkshire Hospital in Reading, where he had been treated since childhood for kidney disease.
To date, the charity has paid for more than £130,000 worth of equipment.
Charles, one of five children, was five when he was diagnosed with nephrotic syndrome, a form of kidney disease. Symptoms include large amounts of protein in urine, swelling in the legs, feet and ankles and higher than normal fat and cholesterol levels in the blood. Loss of protein can cause blood clots and increase the risk of infection.
At the time he was a pupil at Nettlebed Community School and he would have to miss weeks of classes as he was in and out of the Royal Berks and sometimes Great Ormond Street Hospital in London.
This continued when he moved on to Gillotts School in Henley.
Mrs Lewis, 76, recalls: “He would always have the same corner bed. Malcolm would come from work and bring the girls with him to visit.
“Charlotte [eldest daughter] was so efficient. I would prepare dinner then she would feed everybody and I would come home at 10pm.”
Her husband, a retired commercial director, adds: “It affected the whole family and they were all wonderfully supportive.”
Despite his illness, Charles was able to play rugby at Henley Rugby Club until he was in his teens.
Mr Lewis, 81, says: “He was going to play for England! It was an amazing time but he had to stop when he got to his teens because he still had the kidney problem.”
Charles also became interested in cooking when he was 13 and went on to train as a chef at The Henley College from 1992 to 1994.
Mrs Lewis says: “He was the first boy at school to do home economics and he won a competition for his cooking. Previously it had always been won by girls.”
In 1993, when Charles was 16, the family flew to Australia, where Charlotte had gone to live after getting married.
They had to arrange for bags of dialysis fluid to be delivered to Charlotte’s house with the help of the renal unit at the Royal Berks.
Charles would have to change the bags for his continuous ambulatory peritoneal dialysis every four hours.
He was on the transplant waiting list from August 1993. In those days transplants were far less common than they are today.
Mrs Lewis says: “When we found out he could have a transplant Charlotte and I both said‘he can have one of my kidneys’. We asked the doctor who thought he might end up with two patients!”
In the year before his transplant operation, Charles had been in and out of hospital.
Mrs Lewis still remembers the day when they received the phone call saying that there was a kidney available that matched Charles.
She says: “It was December 17, 1993, a Sunday morning.”
Mr Lewis adds that Sunday mornings are the most likely time for transplant organs to become available because of the number of road accidents on Saturday nights.
The couple rushed Charles to the Oxford Transplant Centre for the operation.
Despite his apprehension at surgery, the 16-year-old’s biggest concern was not being able to take charge of the family’s Christmas dinner a few days later.
“All he could say before we left was‘what about Christmas lunch?’ but we told him we would put Christmas on hold,” recalls Mrs Lewis.
Charles had the surgery later that day and the family spent Christmas in the hospital as Charles recovered. The new kidney worked straight away. Mrs Lewis says: “It was amazing how well it worked. It was like putting a new engine in him. It made such a huge difference.
“He had to stay in hospital for a few weeks and then we were back and forth from Oxford every day for six weeks. Charles was raring to go again but he still had to take anti-rejection drugs forever.
“It was an enormous relief to see him looking and feeling so well. After you’ve seen your own child struggle and being incredibly brave it is good to see him doing practically all the things he wanted to again.”
Charles gained a City and Guilds diploma in hotel and catering studies at college and then worked at a number of restaurants including the Springs in North Stoke and Scusi’s and Café Rouge in Henley. He also worked in the wine department at Waitrose in Henley.
His parents still regularly use a chef’s knife that Charles was given when he was on work experience at the Waterside Inn in Bray as a 14-year-old. It was used to carve the turkey last Christmas.
It was a special festive period as Charlotte flew back to Britain from Sydney to be there along with the Lewises’ son Mark, who lives in London, Kate, who lives in Reigate, and Sara who lives in Watlington.
Mrs Lewis says she and Charlotte went down to St Bartholomew’s Church in the village, where Charles is buried, and agreed they couldn’t believe it had been 20 years since his death.
“But he is still inspiring a lot of people and I know he is my right arm in the kitchen,” she adds.
The foundation works under the auspices of the Reading and District Hospitals’ Charity. In 20 years, it has raised:
• £35,000 for several portable dialysis machines for home and hospital use
• £35,000 for equipment for the Charles Bertioli renal seminar room, where staff receive training
• £35,000 for an ultrasound Â scanner
• £10,000 for a hemodiafiltration machine, which provides a gentler form of dialysis
• £8,000 for air conditioning for the renal ward
• £6,200 for four blood pressure machines.
Mrs Lewis says: “There is always a need. They would never be able to buy this kind of equipment in any other way. We always try to build up a sizeable sum when we know what they need next.”
Mr Lewis adds: “When we go to the hospital there is great appreciation from the staff and the people on the ward. They say the equipment has made their lives so much easier.”
The foundation has benefited from numerous donations and fund-raising events. When the late Tony Lane was Mayor of Henley he made it one of his charities during his year in office. It has also been supported by the charity action group at Phyllis Court Club in Henley, Henley Lions Club and Henley Ladies Probus Club.
Mr Lewis says: “It’s amazing how many people come forward to help.”
One of the more unusual fund-raisers was a pantomime held at Broadmoor psychiatric hospital in Crowthorne, Berkshire.
Mr Lewis recalls: “Somebody who knew Charles offered us the chance to benefit from the panto so we went along. The first person who greeted us was dressed to be the dame. I thought he was a member of staff but he wasn’t, he was a resident.
“We stood up on the stage and talked about the foundation and the people there were wonderful.
“Through all the events Charles is there with us.”
Mrs Lewis says: “He is still working very hard and people find it inspirational. We know a lot of other parents who have lost a child and we keep in touch.
“Another family runs a charity and whenever we see them we say how special our children were.”
The foundation also promotes organ donation. Charles’s corneas and heart valves were used in transplant operations.
Mrs Lewis says: “We don’t know who they were donated to because it’s kept confidential.
“All we heard was a 25-year-old man who had lost his sight was able to see again and two babies — one two months old and another two years old — had his heart valves, so he saved their lives.
“At the time my mother said that was the best present we could have asked for.”
The couple say the people of Nettlebed, where Mrs Lewis has been a member of the parish council for 17 years and chairwoman for seven, have always been generous.
“People would say they wanted to do something and then other people would respond,” says Mr Lewis.
“If people did not come to an event they would send a donation.
“It’s support by local people that has kept the foundation going and kept it in people’s minds.”
Mrs Lewis adds: “The money is raised by the community and it helps the community.”