We always say we won’t let CF affect Matthew’s life

A Tallaght father renewed his appeal to take part in 65 Roses Day while he explained that living with cystic fibrosis is like “not being able to change the oil in your engine.”

Luke Kennedy, from Millbrook Lawns, saw his son Matthew (13) fighting with the condition daily since he was born, as there is no current cure.

In 2023, the approval of the Kaftrio ‘revolutionary’ drug by the Government was welcomed by the family as it made the disease less impactful on people’s bodies.

However, marking the annual event that encourages everyone to fundraise for Cystic Fibrosis Ireland, 65 Roses Day, Luke opened up about how challenging life still is for Matthew.

“It’s not as bad as it used to be, but now that he has started secondary school, missing a few days can mean he falls behind and we are considering additional classes.

“For people with Cystic Fibrosis, the main issue is the lungs. They can pick up infections very easily and what would make the rest of us sick for a few days could put Matthew in hospital for two weeks.

“He also burns more calories so he needs to eat a lot not to have weight issues, which would also be a problem if he ends up in hospital.

“He does physio and breathing exercises every day and has to take tablets in the morning and in the evening, besides carrying some with him.”

Luke explained that while many people in Ireland carry the Cystic Fibrosis gene, both parents have to carry it for the child to develop the condition.

While the Kennedys knew there might be a risk, as their late niece died from CF in 2018, they were “devastated” when they found out about Matthew.

“He was on antibiotics as soon as he was born and stayed on them up to the age of four,” said Luke.

Every winter, all the family members get a flu jab, and on the coldest and wettest days they have to make sure that Matthew stays out the least possible, dropping and collecting him from school.

“To him this is just life, as he was born with it, and we always say we won’t let CF affect his life,” said Luke.

“But it’s a daily fight, and sometimes there are things he wants to take part to but he just can’t.”

65 Roses Day, which is named after the way children would pronounce ‘Cystic Fibrosis’, will take place on Friday, April 11.

This year, Cystic Fibrosis Ireland set a fundraising target of €300,000.

A recent survey they conducted showed that despite advancements, “significant challenges from accessing medication to obtaining financial products such as insurance, still exist for people living with the condition in Ireland.”

According to the charity, donations also support research, clinical teams, listening services, and advocacy efforts to empower people living with CF and their families.

For more information, visit HERE.