A Nottingham mum has spoken of her fond memories and the strength shown by her son, who died at the age of nine.
Carter Reece Lamb passed away peacefully in the arms of his mum, Victoria Lamb on July 14 having battled with the effects caused by a rare disease.
But despite his daily struggles, Victoria, of Wollaton said she will remember the smiley boy who was always happy no matter what he was going through.
“I got my strength from Carter because he fought through and never lost his personality,” the 31-year-old said.
“Even when he was so ill and became so skinny, he wanted to play and do what he enjoyed.
“In his final days he was smiling – he kept me going.”
Reece was born with a rare form of Mitochondrial disease (known as mito) the specifics of which still remain unknown.
Mito is a term given to a group of medical disorders caused by mutations in the tiny organelles (mitochondria) that are present in nearly every cell in our bodies and which generate about 90 percent of the energy we need to live.
When these cells don’t function properly, the results can be serious and wide-ranging.
For Reece, it had a large impact on his ability to eat and absorb food for nutrition leading to monthly and eventually weekly visits to the hospital.
Early in his diagnosis, health experts told Victoria that he wouldn’t live past three years old but he defied the odds and did it with a smile.
“As long as his pain was under control, he was just always happy,” Victoria said.
“Everyone knows his smile, he was very cheeky and loved being around other children.”
As the years went on Carter, who attended Oak Field School in Bilborough, had to deal with more problems that even lead to him suffering a cardiac arrest where his heart stopped for six minutes.
But after spending a week in intensive care with a breathing tube, Victoria remembers the moment it was removed, he smiled and took a breath on his own.
While there was a spell of success for Carter after he had a special ‘mini button’ feeding tube attached, which helped to prevent him becoming sick as often, the symptoms soon started to return.
Victoria said: “The doctors tried everything to help him – he was given a PICC line for feeding but he got sepsis within a week so it was too risky to try again.
“He was losing weight constantly as the disease meant his body didn’t have the energy to absorb food.
“It got to the point where we were basically living in hospital and they just said there was nothing more they could really do.
“It was decided that it was best to stay at home and for his last eight weeks he just had milk but his body had given up.
“He basically starved and two days before he died, he weighed just 10kg.”
After nearly losing Carter when he stopped breathing at home, Victoria was told that it was his body’s way of telling her it wouldn’t be long.
Rather than be in a stressful environment, she opted to take Carter to Rainbows Hospice for Children and Young People in Loughborough.
“I wanted him to pass peacefully and we arrived on the Friday, and then they brought in another bed so I could lie with him,” she added.
“I just held him in my arms, we had sensory lights on which he loved and it was so calm.
“It brought me some comfort after he fought for as long as he could. I think I was in denial and thought he would just keep fighting, so it has taken time to sink in.”
Victoria was accompanied by her mother, Elizabeth Flanagan, who she said was the closest person to herself and Carter.
Elizabeth, 59, said: “He brought so much joy into my life and I’m so proud of him.”
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At Carter’s funeral, he was laid to rest with his favourite toys including a teddy from his favourite character in The Lion King, Simba which he watched often.
“He had a really big personality and would always show you what he wanted,” Victoria added.
“He wanted to know what was happening and who people were.
“He left a mark on whoever he met.
“I loved being his mummy and doing all his care needs and I would do it all over again if I could.”
In the wake of his death, friends of Victoria have set up a fund to provide some support to her, while she figures out her next steps.
The mobility car she has used and funding provided to her for Carter will now be stopped, and so Victoria says she will be looking for a job but the money will help towards a car.
“It’s taken a huge weight off my shoulders as I won’t have the car after September and I wouldn’t be able to buy one,” she said.
“It’s also going to be a big change to my life going forward and it’s all a bit of a blur at the moment but I’m just trying to keep busy.”