The birth of a baby is likely to be one of the happiest days of its parents’ lives.
But for Bruce and Nicola Edmond there will be a tinge of sadness amid their joy.
The couple had hoped their terminally-ill toddler Jack would live to meet his younger sibling.
Sadly he died in June after battling an incredibly rare metabolic disease known as mucolipidosis (ML2), which leads to organ failure, since he was born.
However, the couple – whose new arrival is due in October – have remained positive despite losing their two-year-old son, and say they packed a childhood’s worth of memories into little Jack’s short life.
Mrs Edmond, a pediatric physiotherapist at the Royal Aberdeen Children’s Hospital, said: “He was actually doing so well that we decided to have more family so that we could have memories of them together before we lost Jack.
“Unfortunately that hasn’t quite happened but that’s what’s next for us – we’ve got a baby due at the end of October.
“That’s the next chapter – we’re going to tell them all about Jack and we have all these memories and all of these photos.”
And Mr Edmond, who works as an accountant, joked that they had set the bar “high” with all of the fun memories they had packed in for their son over the past two years.
The couple said they still vividly remembered when they were first given the terrible news, after their son began experiencing difficulties feeding and breathing at four months.
Mrs Edmond, of Inverurie, said: “At that point we were just devastated, we thought he would just deteriorate and die. So we had a tough couple of days then.
“Especially because he was just like a fourth-month old baby and so t that point it was a real shock that this is what was happening. There was no treatment, no cure and he was going to die and that’s what we were dealing with.”
Mr Edmond added: “They said the brain was affected and he may not know us or not be able to see and hear us. That was really hard, I think I took that the worse. That was devastating.”
Around two children a year in the UK are diagnosed with the rare disease.
The couple – who were told Jack had a life expectancy of about two years – admitted they were both so devastated by the diagnosis that they initially did not ask if there was anything that could be done to treat him.
However, doctors at Glasgow’s Royal Hospital for Children told them they were “out of options”.
Although distraught at the idea of losing little Jack, the news gave the Edmonds the focus they needed to ensure he got the most of out the remainder of his life, and they sought help from Children’s Hospice Association Scotland (Chas).
Last night, they said this was vital in helping them cope emotionally and also ensuring their son lived a happy life.
Chas provided them with a Diana Children’s Nurse, alongside its At Home service, who helped care for Jack if his mum and dad needed respite. Advice and support was also offered.
Mrs Edmonds said: “Because of Jack’s condition, we were always quite worried that he would deteriorate suddenly so we never wanted to leave him for very long but knowing that Chas at Home were there we knew that if he did deteriorate they were experts and they would know what to do – that was really important.”
The family also spent time at Chas’s hospice in Kinross, where little Jack loved the sensory room, music lessons and staff there.
Mr and Mrs Edmonds had hoped they may be able to take the toddler there to spend his last days, but in June he contracted pneumonia and died in hospital.
Knowing they would get comfort from the Chas team, the pair took his body there in the days before the funeral.
The charity were so important to the family that the Edmonds asked the hospice chaplain, Monica Stewart, to be the minister at Jack’s funeral in St Andrews Church, Inverurie.
The Edmonds are attending the CHAS Aberdeen Ladies Lunch this Thursday at the Marcliffe Hotel.
Mr Edmond will be addressing the audience and talking about his experience with the charity.
