Tag Archives: Cystic Fibrosis

TWO Clare children with Cystic Fibrosis who have a rare genotype are being “discriminated against” due to their exclusion from availing of a transformative “wonder drug”, a local councillor has claimed. The HSE has been in negotiations since May with Vertex about giving access for a therapy called Kaftrio for 35 young children with a specific genetic condition. This is already available to other Irish patients under an existing deal. Councillor Mary Howard described Kaftrio as a “wonder drug” that stops the progression of Cystic Fibrosis in the body. She warned that many of the 35 children are not well and have been regularly hospitalised, with more hospital visits expected to increase as the winter progressed. Speaking at a council meeting on Monday, the Fine Gael Councillor said adults and those 12 and older have been receiving Kaftrio. Last May, she recalled all children who were older than six were supposed to receive this drug. “There are 175 children with …

AN Ennis mother of a child with Cystic Fibrosis has vowed to continue to fight so her child and others can access ground-breaking treatment at the centre of a dispute between the HSE and a pharmaceutical company. Barbara Buckley was among hundreds from across Ireland who last week gathered outside Leinster House for the “Support the Kaftrio 35” protest. Cystic Fibrosis Ireland estimate that around 140 children aged six-years-old to 11-years-old are already are on the drug Kaftrio, but 35 children with a particular genotype are not as they are outside the 10-year Portfolio Agreement that was signed by the HSE and Vertex in 2017. Barbara’s daughter is almost six years old and had expected to begin the treatment after Christmas, however without a resolution to the dispute she is set to join those who have been excluded. “Time is vital. Every day and every week ahead counts, CF won’t wait for the HSE and Vertex,” she told The Clare …

AN EMOTIONAL appeal has been issued by the father of a young Shannon girl with Cystic Fibrosis, as the county’s rate of Covid-19 spiked sharply this week. Kieran McCarthy, dad of 12-year-old Aoibheann, and a member of Cystic Fibrosis Ireland (CFI) is urging people not to become complacent about their safety and that of others, especially the most vulnerable. He said that in recent days, he has seen “crazy things,” that are very upsetting to his family and to others at risk. He told The Champion he believes the change in government has led to confusion over the safety message, and called for more to be done to convince younger people of the need to protect their families and the wider community. “Some people don’t understand because they have never had to experience illness or loss,” he said. “Some people are oblivious. Nine out of ten teens don’t understand hardship and loss. What they don’t realise is that it will …

WE REALLY need a break. The last four and a half months, since the pandemic was declared, have taken a huge toll. With the possible exception of the Emmy-nominated actor, Paul Mescal – a man with West Clare ties, and for whom the last year has seen his star rise and rise – most of us would prefer to write off 2020. We have suffered grief and loss. We are struggling with terrible uncertainty about the future. Every single one of us has made heroic sacrifices and now fatigue is setting in. We are battle-weary. The sun is shining (occasionally) and there’s a lot of steam to be let off after our spring-time lockdown. Wouldn’t it be great to forget about everything, just for a while? It would be a big relief to pretend that Covid-19 never happened. That it isn’t happening. That it’s okay to go back to our old familiar ways – our cosy chats in close contact …

A LOCAL charity has landed a major coup by securing a rare iconic horse racing photograph for a forthcoming auction. World-renowned Irish horse-racing trainer Aidan O’Brien has donated a signed, framed, embossed photograph of his historic one-two-three winning horses in the Prix de l’Arc de Triomphe last year to the Truck Run 4 Katie charity. Once Aidan O’Brien heard about the charity, which raises money for medical equipment at the Adult Cystic Fibrosis Unit in memory of the late Katie Drennan who died in February 2015, he donated the photograph to her mother, Linda. Katie and her boyfriend of almost six years Josh Halley had previously met Mr O’Brien and the latter’s father also works for the trainer. When Linda’s brother, Rodger Lee, who is also involved in the horse-racing industry, approached the horse trainer to support the event, he was delighted to donate the photograph. Linda said Mr O’Brien has only two framed photographs of his historic triumph, one …

SÍLE Callinan lived a very full life and central to that was her love of football. The Cree girl sadly passed away on March 17 this year, aged just 26, having suffered a collapsed lung, brought on by Cystic Fibrosis (CF). Her death left her family and fiancé devastated. Síle was the youngest of Paddy and Mary Callinan’s three daughters and engaged to Micheál Talty, Quilty. She was a primary school teacher and worked as a resource teacher in Cree, Cooraclare and Kilrush, while Síle also taught at Labasheeda National School for a year. While her sister Anne-Marie and Micheál are certain that the last thing Síle would want is a fuss, they are leading the organisation of a 12-team seven-a-side ladies’ football tournament in Cooraclare on Saturday, October 7. “My dad has a big interest in football and the three of us played. Síle started at corner-back and she was moved up to the forwards but she didn’t hold …

Cystic Fibrosis (CF) patients can now look forward to “gold standard” testing equipment, previously only available at international specialist centres. All proceeds from the Truck Run 4 Katie fundraising event have been used to purchase state-of-the-art equipment for the Adult Cystic Fibrosis Unit in the Leben Building at University Hospital Limerick (UHL). Katie Drennan, who died in February 2015 aged 24, tirelessly campaigned for better services for CF patients in UHL. The Truck Run 4 Katie, which was held in her memory last September, raised more than €120,000. Respiratory consultant Dr Brian Casserly said the new equipment means the hospital is now “operating at an international standard, above and beyond national standards for the treatment of CF patients”. “University Hospital Limerick wants to be the leading light in terms of CF and this is one step in that direction,” he added. CF patients attending UHL can now avail of equipment that provides direct measurement for exercise tolerance and capacity. Previously, …

THIRTY-two-year-old Robert Cook from Kilrush faces an every-day battle with cystic fibrosis. He lives in the West Clare town with his wife Sandra and their two children and, on the surface, everything appears normal. “We are an ordinary family that do the day-to-day things all families do. But the difference between my family and most is that I was born with an inherited life-threatening genetic disease. Cystic fibrosis affects the lungs, pancreas and most other organs in the body. The lungs are affected the most. Cystic fibrosis is a thick green mucus, which is produced in the lungs, making it harder to breath and also is a breeding ground for lung infections and inflammation,” Robert explained. Every morning, Robert has to use a nebuliser before trying to get on with his day. “My daily routine before I have breakfast or even a cup of tea involves having a number of nebulisers to work through, to help my lungs and the …