In Memory Of Our
This is the article that was printed in the Shropshire
In the photos above: Left: Rebecca with her father Marc
Right: Diane Stalker shows a picture of her daughter Rebecca, with her sister Rochelle
When Graham Norton agreed to be a celebrity patron of the charity DebRA UK he described EB (Epidermolysis Bullosa) as “the worst condition you’ve never heard of”.
That’s exactly how Marc and Diane Stalker felt when their new baby daughter Rebecca was diagnosed with the genetic condition which causes painful blisters and open wounds all over the body.
At that moment they knew nothing about it, they had never heard of it — but it claimed Rebecca’s life when she was just 11 weeks-old.
Now Diane and Marc, from St Georges in Telford, are determined that everyone will hear about EB because as yet there is no cure and more help is needed to find one.
That means a massive show of public support is needed to save children like Rebecca.
“I think the day she was diagnosed was the worst day for me,” said Marc.
“Up until that point we had hope that it was nothing serious. We had scoured the internet for other things it could be, less serious conditions that would not have caused Rebecca so much pain, so when it was confirmed the future suddenly became very frightening.”
Diane added that the first sign something was wrong came when Rebecca was born. She had no fingernails and the tips of her fingers were longer than usual.
There were also blisters on parts of her body although the EB had not attacked her fragile but beautiful face and the couple clung to the slim chance that their little girl could be fine and it was just a temporary problem.
Within two weeks doctors felt it was vital to carry out a skin biopsy and two weeks later their worst fears were confirmed.
“I don’t think we really took it in, what it all meant and they were no definite answers at that time,” added Diane, 27. “At that initial consultation we were told that babies with the particular strain of EB which Rebecca had only lived for two years.
“By the time we got home a specialist team from Birmingham Children’s Hospital was waiting to help us and they said it was more like a year. In that moment I had lost a year of my daughter’s life.
“We knew then we had to make the most of every minute and the main priority was to ensure life was as painless and happy as possible for Rebecca.”
Diane and Marc have found comfort in knowing that they were able to do the best that they could for their new baby because of the help and support from dedicated medical teams and their friends and family.
“Rebecca was born on April 15 and died on July 1 last year. That 11 weeks was such a short time to have with our child but it also seemed such a long time.
“I don’t think we ever slept or could eat properly because we were coming to terms with a devastating condition. We constantly worried about how much pain she could have been in because she couldn’t tell us.
“Her bandages needed to be changed regularly and because she had open wounds all over her body we had to be so careful about infections.”
The couple said they had only the highest praise for the staff on the Children’s Ward at Telford’s Princess Royal and the team from Birmingham, including their specialist nurse Ruth.
The support they had ensured that Rebecca’s condition didn’t stop Diane and Marc making her an integral part of their family with a photo album and DVD packed with happy memories.
The couple also have an older daughter, eight-year-old Rochelle, and she adored her baby sister.
“I told Rochelle the truth when she asked me one day on the way home from the shops if Rebecca was going to die,” explained Marc.
“We wanted to be honest with her so that she also had a chance to come to terms with it and she has coped very well. After Rebecca passed away we brought her to the hospital because she asked if she could hold her and she did.”
Diane added that Rochelle had helped her to save some poignant mementoes including a lock of Rebecca’s hair and her footprints and handprints in paint.
“She died very peacefully, it was so very calm and all the pain had disappeared from her face. Now it’s so very important to do something positive in her memory.”
Marc said that when he first called DebRA UK — the charity set up for victims of EB and their families — the gentleman he spoke to said their ultimate aim was to close down.
“He told me if they closed it would mean a cure had been found and EB would have been eradicated,” he added.
“In its own way it was such a positive thing for him to say and I know that they need our support to do it and in the meantime to help families like ourselves. I don’t know what we would have done without them.”
Now Diane and Marc are supporting a sponsored run taking place on June 12 to raise funds for
DebRA UK. It has been organised by the Club Moativation team at the Moathouse Hotel in Telford and starts at 2pm.
The event will be held exactly a year to the day when Rebecca was christened and her parents believe it will be a fitting tribute to her if it helps to make a difference to other EB sufferers.
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July 11, 2006