Mark Knox and Susanne McCusker with their boys Shay and Zach launching their Castlewellan Park Fun Run in aid of Histiocytosis UK.
A KILCOO family organising a charity fun run this weekend, are hoping to raise awareness of the very rare disease their little boy has.
Shay Knox was just eight weeks old when he was diagnosed with Multi System Langerhands Cell Histiocytosis (LCH) and received his first chemotherapy treatment before he was 10 weeks old.
Shay, who is now 18 months old, has already endured some 15 months of chemotherapy and is on regular medication and requires weekly blood tests.
His mother, Susanne McCusker said when Shay was first diagnosed and she began reading up on what the illness was, her “heart was broke”.
“At the start when I was reading all about it, it was all the worst-case scenarios,” she said.
Susanne said she had “a normal pregnancy” with no issues and had a natural birth with Shay, who weighed 9lb 12oz when he was born on 4 February 2017.
“My pregnancy was 100 per cent, I had no concerns and it was actually easier with Shay than it was with my first pregnancy.
“There was nothing to worry about and I had a natural birth, I was only in the hospital for a few hours,” she said.
However, when he was 10 days old Shay began coming out in small marks.
“His symptoms started out as little pimples, wee spots on his skin, it nearly looked like a heat rash.
“I took him to the doctor then but they didn’t know what it was. He was diagnosed with so many things in those early days because they didn’t know.”
Shay was then taken to Daisy Hill Hospital where he was kept for a week before being sent home.
“He actually got worse after that and he was sent back in. His tests were coming back clear but at this stage he required full-time oxygen and was on feeding tubes.”
Susanne and her partner, Mark were very concerned about what was wrong with their little boy. Shay was then taken to the Royal Victoria Hospital for Sick Children, where the family were told he would see a haematologist.
“It was while he was there that a dermatologist actually said she knew what this was, that she had seen it once before. She diagnosed him with LCH.
“We had weeks of not knowing what was going on or what he had, so we were relieved that someone finally knew what was going on.
“He was fading in front of us, he was just lifeless in his cot,” said Susanne.
“He was sent for chemo and it kicked in straight away. We could see such a difference, he was taken off the oxygen and put on steroids.
“He was discharged from hospital and was off the oxygen and feeding tubes. He was sent home with some medication and a specialist milk.
“We could see a real difference in him, he was more awake. Even though he was only 10 weeks old we could see an improvement. He was keeping his eyes open for longer.”
While the diagnosis was given as LCH, Susanne says the doctors are not in agreement as to what type of illness it is.
“It’s in his skin, lungs and his skull but the doctors didn’t know that until he was taken to the Royal. It’s so rare and none of the doctors knew about it, they were all guessing different things.
“It is a cancer-like illness, but even at that the doctors can’t agree on what it is. Some say it’s an auto-immune illness, others say it’s a cancer, but very little is known about it and it’s currently classified as a cancer.”
While Susanne said “things are looking good now” Shay has come through intensive bouts of chemotherapy.
“He sailed through the chemo, he got it every week, then every two weeks and then down to once a month. He had three failed attempts at chemo,” said Susanne, who said each treatment was “a higher dose”.
“He ended up on a very high dose, basically two chemos together and he had to stay in hospital for 11 weeks. We got him home for Father’s Day, but he was in and out of hospital in between then.”
In the meantime, Susanne’s family - her aunt Jackie McIlmurray and friend Pat, came up with the idea of organising a fundraising event to raise money for one the charities which has supported the family.
“We are fundraising for the charity Histiocystosis UK, a charity which aims to promote awareness and raise funds for research into this rare disease,” said Susanne.
Having initially set a target, Susanne said she has been delighted with the amount of support given already, ahead of the fun run.
“I had hoped to raise a couple of hundred pounds and when the JustGiving page was set up we set £500 as our target and I thought we would be lucky if we got that.
“Now we have almost £1000 already and that is before the fun run. I am stunned by how generous people are and we have received cash donations too and shopkeepers have been so generous as well.
“We thought it would be mostly family and friends doing the fun run, but now it seems to be taking off. We are doing a picnic and my mum’s boss has donated bottles of water for it.”
Susanne said she will have other charities to fundraise for, which have all provided much-needed support to Shay and the family, including CLIC Sargent.
“My oldest son, Zach turned three in April. Shay was actually diagnosed on Zach’s second birthday. When Shay is in hospital Zach always says “I miss my brother” and he will ask if he is allowed to go and see him.
“Zach isn’t allowed into the outpatients in hospital because of cross-contamination, but he is allowed to go to Paul’s House, run by CLIC Sargent and he calls it his holiday home.
“When we have not been using it, he asks when we’re going to the holiday home. He is also happy when he’s with his nanna or granny, as he knows they’ll spoil him! And Shay knows this too, so he likes to be with them both.”
Susanne said both she and her partner, Mark are so grateful for the support they have received from everyone.
“Mark works at TS Foods in Castlewellan and they have been fantastic. They have been so supportive and helpful and allowed Mark time off whenever he has needed it.
“I would like to thank my mum Anne Marie, Shay’s godmother Martina McCusker and Mark’s mum Roberta. They have given us so much help and support.
“Between them all I literally could not have done without them, they come at any time we need them to.”
The 5k fun run, walk and jog will take place this Saturday, 25 August in Castlewellan Forest Park at 2pm, with registration at 1pm. The entry fee is £10 per adult.
You can also donate via the JustGiving page, search for ‘Shay Knox Fun Run’.