THE parents of a 19-month-old boy are planning to set up a charity in his memory after he died at home in their arms.
For most of his life, James Dowers lived in hospitals, suffering from an unknown and undiagnosed disease. Tragically, the toddler lost his battle for life on September 25, and died in his parents Chris and Emma Dowers’ arms at their home in St Ives.
His parents had in February appealed through The Hunts Post to find a bone marrow donor for James in the hope it would help him fight the unknown disorder that was attacking his immune system.
But while a donor was eventually found, it was too late for James.
Emma told The Hunts Post: “He was a really happy boy. The nurses at Hinchingbrooke said that when they had to wake him up during the night to give him his medication, he would smile. He was the only child they had ever seen so happy being woken up so early for medication.
“I tried his medication to see what he was going through and they tasted so awful. I don’t know how he managed it with a smile.”
“People always ask me how I was able to cope with his illness, but James made it so easy because he was always smiling and laughing and never made a fuss. I will miss him dreadfully.”
Chris added: “Despite where he was, what he went through or what was done to him, he came through with a smile and a joyous laughter. Every moment with him was a blessing and a great privilege. To me this is not a day of sadness but a day of celebration and remembrance of a little boy who fought with all his heart against incredible odds, who triumphed and inspired many, including myself.”
James was just 10-weeks-old when Emma, 27, and Chris, 25, first believed there was something wrong and took James to Hinchingbrooke Hospital, Huntingdon, as he wouldn’t drink milk and he had diarrhoea.
A week later he started to have seizures and it was discovered that he had an virus in his brain and two infections in his lungs, causing a strain on his heart.
Emma and Chris were told James was seriously ill and would need intensive medical care at Great Ormond Street Hospital in London.
“When he was first taken to Great Ormond Street I wasn’t allowed to see him,” Emma said. “But at 6am the following day I was allowed to visit – he was covered in tubes and lines. I couldn’t see his face, I couldn’t really recognise him. It was terrible.
“We were told there was no way he would make it as his heart was really struggling.”
James was tested for several diseases, but after two months in the specialist children’s hospital, his parents were told that James could not stay indefinitely and it was hoped that his illness would pass.
He was taken back to Hinchingbrooke Hospital where more tests were carried out and was discharged in October. Weeks later James had another infection and was back in hospital, although he was well enough to spend his only Christmas at the family home in Dunnock Way.
January saw his condition take a turn for the worse as red spots and bruising appeared on his body, caused by a low red and white blood cell count. At this time doctors said that James’s immune system was so low that any bacteria could infect him.
Another trip back to Great Ormond Street failed to find out what was wrong, but it was suggested that a bone marrow transplant could cure James.
In February The Hunts Post appealed for readers to sign up to be a bone marrow donor for James, but because he was mixed race, a donor wasn’t found until later in the year – a donor from Korea.
Over the next months James developed various infections, one which damaged his kidneys.
“In July, a bone marrow match was found for James, from the placenta of a Korean woman. Normally there is a one in 10 chance of surviving chemotherapy at James’s age, but due to his condition, he was given half of that chance,” Emma said. “We were told that it was the only thing that would help him. I thought it would be an end to the nightmare.
“He had his first chemotherapy on July 18 and the transplant a week later, but it made him worse.
“All the toxins in his body were damaging his kidneys, his liver and his brain as well.”
James’s parents were told the damage was too severe and he was taken off the dialysis and respiratory aids and he died two months after his transplant.
After James’s funeral Emma plans to set up a charity in honour of her son to help fund research into mitochondrial disease.
Chris said: “James had a muscle biopsy which showed that one of his problems was possibly the disease, and at the moment there is no cure, so we want to help the research so other children don’t go through what James had to.”
INFORMATION: James’s funeral is on Friday (October 5) at The Vicarage, Westwood Road, St Ives. The family welcome anyone who wants to attend. Donations will go to The Children’s Mitochondrial Disease Network in James’s memory.
The Anthony Nolan Trust has 400,000 potential donors on its books. To join donors must be aged 18 to 40 and be living in the UK. To find out more go to www.anthonynolan.org.uk