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A few feet from his photograph is the room where Matthew used to sleep. It later became a play-room for his brothers, Travis and Connor, and now it’s a utility room, but it is still known as “Matthew’s room”.
“Matthew is still very much part of the vocabulary in the family,” says his mum Angelina, sitting on the dark, leather settee alongside husband Ian.
Back in 1998, the Bacon family were the first to be referred to the Butterwick Children’s Hospice, newly-built at Stockton with the help of an appeal in The Northern Echo, which had been launched after the death of Princess Diana. When Butterwick House opened, the couple were chosen to help cut the ribbon with Take That star Gary Barlow and hospice founder Mary Butterwick.
Now, in the midst of Children’s Hospice Week, Angelina and Ian, who live in Drinkfield Crescent, Darlington, are telling their story to underline the importance of hospice care for families unfortunate enough to have a desperately ill child.
Matthew was born at Darlington Memorial Hospital on July 15,1993. Angelina had miscarried his twin and Matthew was born 13 weeks prematurely. Within days, he’d suffered a brain haemorrhage and been rushed to the special baby care unit at Princess Mary’s Hospital, in Newcastle, and then the city’s Royal Victoria Infirmary. It was the beginning of a traumatic, fragile, short life, with Matthew not coming home from hospital until October. He was diagnosed with cerebral palsy and he was a quadriplegic.
“He couldn’t walk, couldn’t hear and had limited vision,” explains Angelina. “We could only make him smile by tickling him or blowing on his face.”
Matthew wasn’t feeding properly so he ended up needing an operation to enable him to be fed through a tube in his tummy. That operation was carried out at Bishop Auckland General Hospital and paediatrician Dr Peter Jones – “a marvellous man” – asked Angelina and Ian if they’d heard about the new children’s hospice at Stockton.
The word “hospice” filled the couple with horror. Like most people, they associated it with death but, over the next two years, they came to appreciate Butterwick House as a place that gave them a new lease of life.
At the time, they had two other young sons and, with the kind of non-stop care required for Matthew, they were exhausted. “We didn’t appreciate how tired we really were until we got a rest at the hospice,” says Angelina, sighing at the memory.
“We were getting up at all hours to care for Matthew and, suddenly, we had some kind of normality again as a family,” adds Ian. “Matthew had this amazing, targeted care, with a hydrotherapy pool, and we realised that he couldn’t be in better hands.”
Part of that respite, provided by Butterwick House, was a holiday to Disneyland, Paris. “It was strange not having to fit in everything around Matthew but it meant we could focus on our other boys and just have a break,” says Angelina.
The amount of time Matthew spent at the hospice was built up gradually and the Bacon family came to see it as a place where they had fun. “We had lovely Christmas parties there, with pass the parcel and selection boxes for the kids,” recalls Ian.
“When Matthew wasn’t happy, he’d cry or tense up but he found peace at the hospice. He relaxed, so we knew he was happy.”
Angelina and Ian knew that Matthew’s life expectancy was low and his health gradually deteriorated, with more operations required. Finally, he was taken particularly ill during a period at home and he was rushed back to Bishop Auckland General Hospice.
“The hospital staff were fantastic but he was in a bad way and it reached the point where I told them to let him go,” says Angelina. “They took the machines away and left the room so we could just hold him.”
Matthew’s body, dressed in his Tigger pyjamas, was taken to a bedroom at Butterwick House until his funeral.
“The staff were so kind. Mary Butterwick was always there – she was never too busy.”
Angelina, an administration assistant at Longfield School, and Ian, a plumber, are now in training for the Great North Run on September 11, raising money for the Butterwick Hospice which gave them rest, care and normality when their unforgettable little boy was born with such a chronic illness.
Life moves on. Also in the lounge, alongside the television, are photographs of Travis, now 24, and Connor, 18. The couple’s pride in their handsome sons is clear. Connor wants to study music and the picture of Travis shows him graduating in medical science from Leeds University. He is now doing his masters in pharmacology and physiology at Bristol University. “He wants to know about the brain and to find out what cures can be found,” says his Mum. “I’m sure Matthew must have helped set him on that path.”
If you wish to sponsor Ian and Angelina Bacon in the Great North Run, go to www.justgiving.com/Angelina-Bacon
THE first thing you see when you walk into the neat semi-detached house is a photograph of a smiling little boy, framed on the wall by the lounge door. It is 16 years since Matthew Bacon died – he was just seven – but he remains very much part of this loving family home.
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This is Children's Hospice Week and PETER BARRON meets the first family to be referred to the Butterwick Children's Hospice when it opened in 1998.
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