'I'm taking part in Runher to mark death of my brave son'
Just a year ago Alicia Conlon's eight-year-old son Piaras succumbed to a condition that also claimed the life of her father, as Kerry McKittrick reports
When Alicia Conlon's father died of leukaemia at 49, it wasn't unexpected. But what was to follow – the tragic death of her eight-year-old son – was a hammer blow.
"There's a condition called thrombocytopenia that runs in our family where we suffer from a low platelet count in our blood. I have it, my dad had it and my son Piaras had it," she says.
Alicia and her family were diagnosed with a familial platelet disorder with myeloid malignancy. Leukaemia would be a looming spectre over Alicia's life as it wasn't a case of if she would contract it, but when.
"When my dad passed away at 49 I thought that by the time I got to 49 they would develop better treatments for it. I also thought by the time Piaras got to 49 they might have even found a cure," she adds.
Alicia lives in Belfast with her partner, Chistopher Braniff. They had two sons, Pol (15) and Piaras who was born in 2004. Pol has not yet been diagnosed with the condition and there is a chance it may lie dormant in him.
"Piaras and I were monitored and had a platelet count done by the hospital every six months. A normal person has a count of 150, mine is usually around the 60-80 mark and Piaras was usually at about 120," says Alicia.
Alicia became concerned around Christmas 2011 – Piaras' platelet count had dropped from 120 to 80 although doctors assured her that was normal. At Christmas, Piaras was sick and complained of a sore back.
In January 2012, the platelet count continued to sink down to 40 and at this point the hospital grew concerned.
"Piaras was sent for an X-ray for his sore back but before he even came back the doctor asked if they could keep him overnight to have a bone marrow test. We had to wait for a week or so for the results but it turned out that Piaras was diagnosed with myeloma dysplasia – a collection of diseases involving dysfunction of the bone marrow," says Alicia.
"It's a condition that usually turns into leukaemia but it's very unusual for children, normally the elderly get it. At that point we were sent to the Bristol Royal Hospital for Children."
Myeloma dysplasia can take anything from six months to 10 years to develop into leukaemia so doctors in Bristol wanted to discuss the possibility of a bone marrow transplant for Piaras after he reached the age of 10 – he was eight at the time. After a battery of tests the family were sent back to Belfast. A week later a letter arrived.
"The hospital wanted us back the next week so that Piaras could have the bone marrow transplant – the disease was more advanced than previously thought," recalls Alicia.
"We went back to Bristol on July 4 for Piaras to have the transplant"
Piaras went through seven days of chemotherapy to remove his existing bone marrow before receiving marrow from a donor. During his treatment the family stayed at a Clic Sargent Home From Home in Bristol – the family were able to be with their son without worrying about hotel bills and accommodation.
"Piaras was so brave while he was in hospital," said Alicia. "Because our condition was so rare they took blood from both of us just for research purposes. Piaras would be sitting there full of tubes and they would come in looking for more. His dad started to say 'no, he's been through enough' but Piaras wouldn't let him. He wanted them to be able to help other children in the future. I couldn't have gone through what he went through."
After the transplant all the signs were good for Piaras. The transplant took and although he had contracted a virus it was mild enough not to concern his doctors. On September 10, 2012, Piaras and his family were told they could go back to Belfast.Back at home, Piaras would need check-ups at the Royal Victoria Hospital every two days. Sadly, a week later he was admitted to hospital.
"He didn't seem sick to me then," said Alicia. "He was still his happy self, playing with his PlayStation. His condition was deteriorating though. The virus in his blood was taking over."
On Monday, October 5, Piaras' parents were told there was only a slim chance he would pull through. By Wednesday, the hospital informed the family that there was no hope and all of Piaras' treatments would be stopped.
"I actually put my fingers in my ears, as if when I couldn't hear it it wasn't true," says Alicia.
"We told them we were going to take him home. The hospital offered to take him to the hospice but we decided he had been through enough and asked them to have him ready the next day. The whole way through his treatment Piaras had been asking for a KFC. We went out that evening and got one and sat round his hospital bed eating it.
"Piaras asked me why he was getting one when he was only on day 76 – day 90 after the transplant is the day you're allowed junk food. We told him it was because his blood count was so high. We just couldn't tell him the truth."
Piaras died at home two days later. He was surrounded by his parents, his brother, his grandparents and aunts and uncles.
"When his eyes closed I wanted to shake him and bring him back," said Alicia. "Instead I told him to go for a wee sleep, that his mummy and daddy loved him."
Since Piaras passed away his family have been tirelessly fundraising for Clic Sargent. There have been supermarket bag packs, street collections and Piaras' dad Christopher and his uncle have cycled the length of Ireland. So far around £15,000 has been raised.
"We want to do something every year," explains Alicia. "I have decided to take part in RunHer as it's on October 6 – close to Piaras' anniversary.
"I'm not an active person so I'm going to walk the route but I won't be alone. Piaras' grannies, aunties, cousins and some of my friends will be joining me. We'll be celebrating Piaras' first year in heaven."
- Runher is open to all women: from competitive runners to fun runners, fitness fanatics to those who want to get fit, school girls, grannies, charity runners/walkers and work colleagues.
- Each entrant will receive a goodie bag containing an exclusive RunHer T-shirt. The RunHer Champion Challenge is again open to teams of 10 women or more and comes with a special pampering goodie bag.
- Charities represented at the event will include: Action Cancer, SOS Bus NI, Marie Curie, MS Society, NI Hospice, Run in the Dark, Macmillan, Sands, Cash for Kids, Tiny Life, Clic Sargent, NSPCC and Diabetes UK among others.
- Register your place by entering online at www.runher.co.uk. You will also find some excellent beginners 5k and 10k training plans as well as top tips for RunHers
- You can follow us on Twitter@Runherofficial#BelTelRunher