Simon starts every day with a strict routine of physiotherapy and up to 25 pills, but you would never know this bright-eyed five-year-old suffers daily from symptoms of Cystic Fibrosis.
For the first 15 months of Simon’s life, his parents watched in frustration as he struggled to breath and appeared to be “coughing to death’’ before he was finally diagnosed with Cystic Fibrosis.
"I remember it as well as yesterday,’’ mum Teresa said. “He had just learnt to walk.’’
Simon’s symptoms started at six months of age, when he developed a constant cough and runny nose that lingered. At one year he was diagnosed with pneumonia. And after that, a lung infection.
“It was very serious. He was in hospital for two weeks,’’ Teresa said.
“More tests were done, and they came back saying he had Cystic Fibrosis. It was a big shock, it was a devastating day. I didn’t know anything about Cystic Fibrosis. It was very overwhelming.’’
Teresa said it took a good year of treatment before she noticed an improvement in Simon.
“He’s come a long way from where he was,’’ she said. “Now he looks like a healthy, thriving boy. He started breathing so much easier. Who would have thought that something like physio, like tapping on a chest, could make such a huge difference?’’
Now Simon has started school, but the beginning of his day is very different to his classmates. He starts his physiotherapy routine by doing exercises through a mask while he takes deep breathes. He then uses an inhaler to clear out his chest. Throughout the day, there are vitamins to boost his immune system and extra tablets every time he eats. He takes up to 25 pills a day. As he gets older, this could increase to around 40 a day.
Despite their daily challenges, Simon’s parents Teresa and Harry, are massive advocates for education and fundraising for more research.
“I feel we’re his voice. There are so many rare diseases out there that people aren’t aware of. I feel a responsibility to raise awareness and hopefully that helps someone else not have to go down the same path as us. If we can raise more awareness and more money, hopefully one day researchers can find a cure.’’