Everyone knows what it feels like to spend days waiting for an important call, but what if that call was the difference between life and death? And what if it never came?
Sarah and Joe Lamont know exactly what that feels like – they spent two years waiting for the news that a liver and kidney had been donated that would save the four-year-old’s life.
Joe has a very rare genetic condition, known as autosomal recessive polycystic kidney disease, and his parents were told he would not survive past birth, but Ms Lamont said he fought hard every day – even after having both his kidneys removed.
She said she was told to arrange Joe’s funeral on more than one occasion and had begun an end of life plan for him when he was just three years old.
When he was very sick she had to carry instructions with her for a paramedic in case they were ever needed, and doctors told her that Joe had been the worst surviving case of sepsis they had ever seen.
So when Ms Lamont realised she had the chance to save Joe’s life, she jumped at the opportunity.
“I didn’t even have to think about it,” she told BBC News NI.
“It had become clear to me that Joe wasn’t going to survive long enough to wait for that call any longer. I felt like we might as well have been waiting to win the lottery.”
So, in April last year, Ms Lamont asked if she could become a double living donor.
The first stage – part of her liver being donated – has now been done and both she and Joe are recovering before their next big operation.
What is sepsis?
Sepsis is triggered by infections, but is actually a problem with our own immune system going into overdrive.
It starts with an infection that can come from anywhere – even a contaminated cut or insect bite.
Normally, your immune system kicks in to fight the infection and stop it spreading.
But if the infection manages to spread quickly round the body, then the immune system will launch a massive immune response to fight it.
This can also be a problem as the immune response can have catastrophic effects on the body, leading to septic shock, organ failure and even death.
In the UK, there are 44,000 deaths from the condition each year.
“At first the doctors were sceptical, your doctor wants what’s best for you and while Joe’s doctors were looking after him, my doctors were doing the same for me.
“It goes against everything they stand for to make a well person sick, even if that’s to save a life, and the hospital in Birmingham had only ever done one similar procedure before.
“I had to go through counselling, tests, mental health assessments and even had to prove I wasn’t being coerced by my own son.
“The doctors needed to know who would look after my other two children and what would happen if I didn’t survive – there was a one in 250 chance that I wouldn’t, but Joe didn’t even have those odds if I didn’t do something.
“I just kept thinking about how hard he had fought to be with us and I knew I had to do the same for him.”
Spending years in and out of hospital had not made Ms Lamont weary.
“I was so excited to be doing something that would really help him that I wasn’t even nervous,” she said.
After the operation, Ms Lamont spent just three days recovering before being allowed to see Joe.
“It was just amazing seeing him and knowing I had helped, that’s what every mummy wants to do when their child is sick,” she said.
“It was really emotional, thinking that part of my organ was inside him and helping him to get better.
“People might think we’ve been really unlucky but actually we have had some brilliant luck that means Joe is still here with us now.
“He’s a hard wee man.”
Ms Lamont said she would like anyone who is not on the organ donor register to really consider whether they would take a donated organ from someone else.
“I would like to see more people having the conversation while they are fit and healthy because often a sudden death can leave a family too distraught to make the decision to donate their loved ones organs,” she said.
“One person can save nine lives if they donate.”
Sarah will donate a kidney to Joe later this year, when they have both fully recovered from their operations.