A brave Dungiven mum has spoken out to raise awareness about a rare genetic condition that claimed the lives of three of her “beautiful” children.
Carmel and Marcus Moore were left heartbroken after the death of their “always smiling and generous” 32-year-old daughter Samantha in 2008.
However, it was only at Samantha’s recent inquest the couple and their daughters, Angela and Christina, were officially told the cause of Samantha’s tragic death was Medium Chain Acyl-CoA Dehydrogenase Deficiency (MCADD). The genetic abnormality causes derangement of the body’s metabolism and frequently causes death in early childhood and affects some 1.4 in 10,000 people in the UK.
The Moores were also told it was likely their other children fell victim to the same condition. Michael died in 1975 aged one year and nine months. Little Erin Maria was just three months and 11 days old when she died in 1980.
“If Marcus and I had known this, through Michael’s death, things could have been very different,” Carmel said. “It’s hard to sit here and say it took three of my children to die for this to be brought to the surface. Marcus and I lost our daughter, the girls lost their sisters, and nieces and a nephew lost an auntie, but now we know why Samantha died. Now we know the doctors and nurses did all they could.”
The family is determined not to let any other family suffer and, as a result of Samantha’s death, they say all babies will be screened for MCADD.
“If any good can come out of it, with the screening, that’s good,” said Marcus, who explained Samantha was diagnosed with epilepsy at nine months old. He believes it was the treatment for that condition which gave Samantha 32 precious years with her family.
Since Samantha’s death, the family has learned in depth about MCADD and say it is vital others are educated too. Not just new mums but adults too, said Christina and Angela, as well as those in the medical profession.
“There must be more communication when people are in the hospital,” said Carmel. “No one should stop asking questions if they think the symptons of their loved ones are unusual. Be persistent. If mums and dads don’t speak out who will do it because their children can’t. That’s where the communication comes in.”
Carmel added: “The more good that can be done for generations to come is what it’s all about. I would never want another family to go through what we have. People must be aware of MCADD. Samantha’s memory will live forever and this is her legacy.”
Solicitor for the family, Philip Adrian Kealey said Samantha’s case was “unique and exceptional”.
“The Moore family dealt with it in an restrained and dignified manner. It was a deeply emotional time for them,” he said.
“They are a model family who communicate well together. All commented on what a bubbly, vivacious girl Samantha was. It is her gift to raise awareness of the condition and plans are afoot to introduce population screening for the condition. It is hoped that the wider public will benefit from the Coroner’s findings and the need for public screening.” The family thanked Mr. Kealey and barrister, Karen Quinlivan for their “brilliant” support and assistance.