A CORK mother bravely helped her baby fight leukaemia shortly after learning he had Down Syndrome.
Mary Clifford from Mitchelstown was among mothers of the Down Syndrome Centre Cork opening up about their courageous battles.
Her son Tom, now two years old, was diagnosed with cancer in July 2017 when he was almost one.
For the next six-months Mary-who also has a seven-year-old daughter named Áine- was spending the majority of her time caring for Tom through intense cancer treatment.
She spoke of the period leading up to Tom's diagnosis.
"As soon as Tom was born one of the medical team drew my attention to his facial features. I asked if he had Down syndrome. He told me that the term they used was Trisomy 21. I was just left there in complete shock. It was really difficult. Even if I was congratulated first it would have made things a little bit easier “The first day taking Tom out in the pram was the most difficult. A lot of people outside of your circle tend to stare and give you this look of sympathy. Fortunately, I have some really great friends who organised for us all to get together and have coffee.I made arrangements to take a year off work to come to terms with everything and get my head around all the appointments that come with having a baby with Down syndrome. "
Mary's life was turned upside down all over again when Tom was diagnosed with Leukaemia in 2017.
Tom was almost one when he was diagnosed with acute myeloid leukemia (AML)- a type of cancer in which the bone marrow makes abnormal myeloblasts (a type of white blood cell), red blood cells, or platelets.
"His blood type had always indicated that he was prone to this disease. However, we knew that if he made it to five without developing it he would be out of the woods.
She explained how their journey began.
"Purple spots on his neck were the first indication of the disease.
Doctors took his bloods and the platelets were low. They wanted to see if they would recover but they kept getting lower. His doctor in the Mercy referred him to Crumlin for a bone marrow biopsy. That was when we discovered that he had the disease. Before this, we had just started to feel like we were getting some normality back. We were even making plans to go on holiday. It was if our lives were being put on hold a second time."
The mother-of-two confessed she was initially fearful of the unknown.
"We had to go back to the Mercy to find out what was ahead. That was when it really hit home. The treatment was a short but intense six months. It was mentioned that we would be in hospital for most of that time. All I could think was "how are we going to do this?" I decided to take another year off work to look after Tom."
Mary did everything to make the experience as positive as possible.
"The caring way staff at the Mercy and Crumlin looked after us made the experience so much easier. I tried to make visiting the hospital an adventure for Áine. I knew this was just as hard on her as it was on us. That's why anytime we had to go to hospital I'd take her to the park or for pizza. There were days that were tough. Seeing Tom lose her hair to chemo was upsetting, but as a mum you just have to keep going. When he wasn't in Crumlin we normally had to take him to the Mercy for weeks on end with infections as his immune system had been compromised."
Nonetheless, Mary remembers the happy times too.
"Tom had a hickman line fitted to administer chemo.
Having something like this is challenging for a curious little boy who loves to move around. He often pulled it out so having it removed in March was a huge relief. He's doing really well now and his results are very promising."
The experience has brought everything into perspective for Mary.
"Seeing how much worse many other families had it made us realise how lucky we are. There were children who didn't make it. In the end our story was a happy one. Tom is now a mischievous two-year-old. We were really worried at the start about how having a child with special needs would affect Áine but it has done nothing but good for her. She has a lovely empathetic little personality and a lot of that is down to Tom.
When my friend was expecting Áine asked if she was having an "ordinary baby or a special one." I thought it was really lovely."
She praised the work of the Down Syndrome Centre.
“I don’t come to the Down Syndrome Centre just for the extra services, even though they have been wonderful for Tom. I also come for the friends who-without the charity-I would never have met.” She summed up the joy her son has brought to their lives.
"There are people out there who look at you with sympathy when they see your child has down syndrome. The last thing you should feel is sorry for us. Tom has brought nothing but love and joy into our home.
This whole experience has made us better people."
For more information on the Down Syndrome Centre call (021) 491 5616 or visit www.dsccork.ie