A Mid Ulster public representative has spoken openly of his anguish as his young daughter was diagnosed with a little-known condition a few months ago – Kawasaki Disease.
And while little Ellie has thankfully made a full recovery, despite being critically ill at one point, SDLP Councillor Malachy Quinn is now keen to raise awareness of the condition.
The Torrent DEA representative told colleagues in the council chamber that Kawasaki Disease is something that he sadly knew “all too well”.
Recounting his experience, he said: “Back in May , just the Tuesday before election day, all elected representatives in the room were out knocking doors – I however was not.
“I was in the children’s A&E with my two-year-old daughter who had been running a high temperature all day and had a swollen lymph node.
“It wasn’t until around 10am on the Wednesday morning before the doctors finally told me that she just had a bad viral infection, and gave her some antibiotics to take and sent us home.”
He continued: “On Thursday as we set about getting ready for voters, I got a call from my wife to tell me that Ellie had started developing a rash and that she was rushing her back over to children’s A&E.
“There she met the consultant who had seen her on Tuesday and he ordered her to the ward right away.
“We both went with Ellie on Thursday night to the ward where they started her on a new antibiotic drip as her condition started to get worse.
“Ellie went from being a lively, active and very cheeky two-year-old to a limp, bed-ridden, dozy two-year-old who if she wasn’t sleeping was crying out in pain to both mummy and daddy just to take her home to her blanky and bed.
“On Friday I was getting messages to say that they may have to transfer her from Craigavon to the Royal but she was too sick to move.
“On Sunday, with her condition getting worse, she stopped eating, stopped drinking, her temperature continued to spike, and despite a shot of morphine there was no sign that she was going to recover and it was now looking like we were facing the worst possible outcome.
“On Tuesday the tops of her fingers and toes started to turn purple and her skin started to peel.
“It wasn’t until Wednesday that the doctors were finally able to give us an explanation, and that explanation was something we had never heard of, Kawasaki Disease.”
Councillor Quinn added: “Kawasaki Disease affects about eight children under five in 100,000 in the UK. It causes the blood vessels in the body to swell and it can cause serious heart conditions up to and including death if not caught early.
“It was that Wednesday that the doctors had no choice but to give her an immunoglobulin transfusion, which meant replacing all her white blood cells because her wee body could no longer fight the infection. That marked the lowest point for us all.
“On the Thursday a special team from the Royal arrived to look at her heart to access the damage done. It wasn’t until the Saturday that Ellie started to show signs of recovery but it was slow.
“And it was a few days later that she started eating something.
“I know most people in this chamber will never have heard about this disease, but it is an important message that we need to get out to the public.
“The symptoms I have mentioned, high temperature, sore throat, swollen glands, red/purple fingers, rash.
“This is a disease that is not well known, but it can cause massive damage to a child who catches it.
“We were lucky that Craigavon Area Hospital have seen cases like this before and once the diagnosis was clear, they worked around the clock to try and cure Ellie. In total she spent over three weeks in hospital.
“We are so thankful to all the hospital staff who treated Ellie so well in that time. I don’t tell this story for sympathy, I don’t tell it to scare people, I tell it because it’s a condition that the public as a whole should know more about.”
At councillor Quinn’s request, council buildings in Mid Ulster will be illuminated in red on January 26 to coincide with World Kawasaki Disease Awareness Day.
A month on from sharing his family’s experience to fellow councillors in December, councillor Quinn explained that he was grateful for the publicity generated following his awareness plea.
Addressing his council colleagues in Dungannon Civic Centre, he stated: “Just regarding the speech that I gave last month with regards to Kawasaki Disease, I know I put it on Facebook and then it was picked up by some of the local papers, and I was very grateful for the publicity that that brought to it.
“I had five phone calls from families in the Coalisland area. This was a disease that was meant to affect eight children under the age of five in 100,000, but I had a phone call from five families whose children had all suffered from this disease, and the first question was ‘I didn’t know there was anybody else [who] suffered from this’.
“It just shows the importance of our policy to illuminate council buildings [to raise awareness of] causes and charities.”