Séamie (age 5), was diagnosed with ulcerative colitis, a week after celebrating his third birthday.  

Mum Rebecca says: 
“As a baby, Séamie was very unsettled, and we always knew there was something just not right. His stomach was constantly bloated and he always had toileting issues. We first noticed blood in his stool when he was 13 months’ old and the relentless journey started from there.  

“Séamie began to have constant diarrhoea, containing blood, up to ten times a day. We had over a year of visiting different paediatricians, all of whom told us that Séamie had toddler diarrhoea, that he was drinking too much milk and that he was eating the wrong foods. Séamie was fading away in front of us, failing to thrive, and anaemia was the only thing showing up in his blood tests. However, we didn't give up. We knew something wasn’t right with our little boy.   

“Eventually, after many blood tests, it showed up that his inflammatory markers were high. He was referred to CHI Crumlin in 2021 and had a colonoscopy. It was confirmed that he had ulcerative colitis. In many ways, this was a relief as our minds had gone to so many places during the lead-up. As little as we knew about this lifelong illness, we knew that it was manageable.  

“Séamie was kept in hospital to receive intravenous steroids to help bring down the inflammation in his bowel. He then began a course of oral steroids and a disease modifying anti-rheumatic drug for the next six months. This gave him little relief from his symptoms.  

“He eventually started on his rocky road of Infliximab infusions and which he now receives every four weeks. Infliximab is an immunosuppressant treatment and therefore Séamie is prone to many infections. This, in turn, impacts what we can do as a family and has implications for Séamie’s younger brother, Teddy (age 3). Séamie needs a lot of care and attention and, as a result, I had to reduce my working week. We rely heavily on our amazing family during times when Séamie is unwell and for childcare during his many appointments.  

“Ulcerative colitis has changed our life in so many ways. As parents, there is a constant worry for myself and my husband Eddie about what the future holds with Séamie being diagnosed so young. He has missed a lot of his Montessori years due to his illness. He has times when he is great but, over the past three years, unfortunately, his bad days outweighed his good days. He has missed many outings, friends' parties and playdates. Despite this, he never gives up and, when he is feeling good, his zest of life is infectious, and he puts a smile on everyone's face.  

“Despite Séamie being in pain for practically his whole life, he finds joy in the simple things. He makes everyone who walks into the house a cup of tea!  

“As parents we could wish for nothing more than that Séamie is happy and content as he grows up. We would love for Séamie’s treatment to be more successful, so that he can enjoy and take part in all aspects of life.  

“Finally, we would love for IBD to be recognised more widely. Although a lifelong chronic condition, IBD is not recognised as a lifelong illness by the Government. This has implications for people living with IBD and is very unfair.” 

Seamie enjoys camping trips, gardening and helping out on the family farm. He loves spending time with both sets of grandparents and his cousins doing lots of different activities. Right now, he is getting an area prepared in the garden so that he can purchase hens this summer and supply eggs to all his family and friends!