Alfie Dardis is looking forward to his Halloween as a Junior Infant. His mum, Gemma, says he has settled into primary school really well and loves playing football.
But mostly she is grateful her five-year-old is living a somewhat 'normal' life. Alfie was born with Cystic Fibrosis - a genetic condition that mostly affects the lungs and digestive system.
As soon as he was born he was rushed straight to Crumlin Hospital in Dublin for life-saving surgery to unblock his bowel. He spent 10 days in intensive care and Gemma says not being able to cuddle him was just heartbreaking.
She says getting his initial diagnosis was an extremely difficult moment:
"We got a phone call to come to Crumlin Hospital to get the results of some tests he'd had. I immediately googled the professor that we had the appointment with and our worst fears were confirmed. He looked after respiratory medicine and paediatric Cystic Fibrosis. CF had been something they suspected and now it was actually happening. As we walked down the corridor I saw him walking towards me and meeting his eye was one of the hardest moments. I didn't want it to be true. I saw the notice on the family room door said 'do not disturb for two hours' and my heart sank. I have to say, the team at Crumlin was amazing - they knew exactly the right things to say at a moment where my world had virtually stopped"
Alfie undergoes treatment each day that includes medicine, physiotherapy and nebulisers. Gemma says last summer was particularly hard because he had to be admitted for a couple of weeks.
"It was my eldest daughter's birthday, Alfie was in isolation, we were in hospital with him for two full weeks. And as hard as it was, seeing some of the other CF patients who were in a lot more serious condition made me realise at that moment, that we were quite lucky with Alfie. But we are very aware of how fragile his health can become. But seeing some of those heartbreaking cases in Crumlin is really tough, especially when your child has the same condition. You can't help thinking a little too much about his future health but that doesn't help anyone."
Now, Gemma says her son is beginning to notice for the first time that he is a little different from the other kids at school.
"He takes enzymes with his meals and he said to me the other day, why don't the other kids have to take them. That is a challenge to explain to him. So yes, there are moments like that when I want to wrap him up in my arms to keep him safe but this is his life and his illness is a part of that".
Gemma said when she told Alfie had Cystic Fibrosis she never thought they would ever get to a place like they are now with Alfie in school each day, Gemma working and their family leading a very ordinary life.
" I thought I'd have a very sick child and that our lives would be torn upside down. The staff at Crumlin Hospital were instrumental in helping us see the wood from the trees when it came to Alfie's health. For that, we will always be grateful. We don't know what lies ahead... but for now, we are doing what we can to help the hospital to help our son."
CMRF Crumlin relies almost entirely on public and voluntary support to change lives for sick children. The charity for Our Lady’s Children’s Hospital Crumlin and the National Children’s Research Centre has provided over €87 million in the past 10 years to help sick children but is calling on the public to continue supporting its cause and contribute to the €20 million fundraising target for the next two years. For more information or to donate visit www.cmrf.org
