Matthew with his dad Luke
Kaftrio drug will help Matthew live a healthy life
THE father of an 11-year-old boy with cystic fibrosis – who will start taking a revolutionary drug to ease the condition this week – is encouraging people to take part in 65 Roses Day.
65 Roses Day will take place this Friday, April 14, to raise funds for the work of Cystic Fibrosis Ireland, and it’s also the day when Ballycullen schoolboy Matthew Kennedy will start taking Kaftrio.
After many months of campaigning by the parents of children with a rare gene that caused cystic fibrosis (CF) to develop, funding for Kaftrio has been approved by the Government.
Matthew is due to start taking the drug this week, after meeting Taoiseach Leo Varadkar on Wednesday morning to mark the culmination of the campaigning for the drug to be funded.
The young boy’s dad, Luke Kennedy, who lives in Millbrook Lawns in Tallaght, said the drug will enable Matthew to live a life with fewer constraints caused by CF.
“Kaftrio will change everything,” Luke told The Echo. “It’s a drug that, at a genetic level, will modify his cystic fibrosis and make it less impactful on his body.
“He’ll be able to keep up with all his friends when he plays football with them, and he’ll be able to live a normal, healthy life.”
While Matthew is an active child who plays for Tallaght Town AFC and Thomas Davis GAA Club, he still has to take medication and do physiotherapy on a daily basis to manage the condition.
Matthew, who attends St Mark’s Senior National School in Springfield, uses a nebuliser several times a day, undergoes physiotherapy and regularly experiences issues with his sinuses and pancreas.
Every time he eats, he has to take pancreatic enzyme tablets so he can digest the food, and he uses a large breathing machine in the form of a vest twice a day, to shake the mucus out of his lungs.
“We’re hoping that will all be relieved when he starts Kaftrio,” said Luke. “Matthew was born into this, so it’s all he’s ever known.
“It’s quite normal for him to have to do physio twice a day or take tablets after he eats, so it’ll be a big change for him if he doesn’t have to do that anymore.”
Matthew plays for Thomas Davis and Tallaght Town
This year’s 65 Roses Day, named as such because it’s typically how children pronounce cystic fibrosis, will be a cause for celebration due to Kaftrio being approved.
It also provides an opportunity for people to be reminded of, and donate to, the work of Cystic Fibrosis Ireland.
Luke added: “We can see the difference Cystic Fibrosis Ireland makes with campaigns to get drugs like Kaftrio, funding research, and providing exercise grants for people with CF.”
Funds raised on 65 Roses Day will help to provide exercise equipment, counselling sessions and grants for people with CF undergoing a transplant or fertility assessment.
Funds will also go to support cystic fibrosis research and the building of new CF hospital facilities and the funding of specialist CF staff.
Cystic Fibrosis Ireland is calling on the people of Dublin to show support for Cystic Fibrosis Ireland this year and to don purple to help raise much-needed funds for people in Dublin living with CF.
You can support Cystic Fibrosis Ireland on 65 Roses Day by donating online at 65roses.ie or buying a purple rose in Dunnes Stores or other participating outlets nationwide.
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