Heroes of charity are so vital for two mums battling to give their kids a life..
Doting parents Louise Lynham and Marie Breenan are so grateful for the support they receive to help Kiera cope with Cystic Fibrosis and 17-month old Conn with Down Syndrome
Abrave mum told how a lifesaving drug is prolonging her daughter’s life and urged the public to support the Woodie’s Heroes campaign. Portlaoise native Louise Lynham lives in perpetual fear that her little girl Kiera will catch an infection, ever since she was diagnosed with Cystic Fibrosis at one-month-old.
When Kiera was five, she contracted a lung infection and was in critical care and the fear that Covid is bringing is heart wrenching.
The devoted mum works as a healthcare assistant in Portlaoise Hospital, so she’s particularly concerned about bringing the virus home.
Louise, 36, told the Irish Mirror: “It’s been tough, even this week there have been suspected cases coming in.
“Kiera was cocooning over the pandemic part of it, I’ve let her see my niece but she’s only waved out the window at friends.”
Without the much needed exercise grant CF Ireland provided for Kiera and others with CF, there wouldn’t be enough support available.
Louise added: “CF Ireland gives us an exercise grant every year and she loves gymnastics, it’s great for her lungs.
“For everyone living with CF, it’s so important to keep the lungs clear, since she’s been taking Orkambi, the new drug, she’s been a completely different person.”
ESSENTIAL
This new life saving drug costs €100,000 per annum, CF Ireland desperately needs funds and Louise told how it’s essential in prolonging Kiera’s life.
She added: “Before Orkambi she was exhausted all the time, they’d be ringing me in school to collect her.
“After taking this new drug she’s a completely different little girl, before she started the Orkambi, she would have been on seven antibiotics a year, now she’s only on one a year.
“I think this drug will save her and prolong her life and give her a better quality of life.
“They don’t give a life expectancy age now, but there was a time when CF patients would only live until their teens.
“But you just don’t know if they get really sick and their oxygen levels drop, their lungs are not working and they collapse.”
Kiera follows a gruelling daily routine, but never complains.
Her mum explains: “She takes 25 tablets a day, does her physiotherapy with specialist machines, there’s so much work, but she doesn’t see it like that, as she’s been doing this since she was a month old.
Initiatives like Woodie’s Heroes campaign mean charities like CF Ireland can help the most vulnerable little patients.
Opening up about how she first felt when her daughter was diagnosed Louise said: “When Kiera (inset) was born she was rushed to a special care baby care unit in Portlaoise and then to Crumlin because she had a bowel blockage.
“We did the heel prick test but we didn’t find out that she had CF until a month later.
“She was 12 nights up in Crumlin hospital after that she was sent home.
“She tested positive, when I found out I was devastated at first but then I learnt to manage it.
“Every three months we went up to Tallaght to get her tested and for her physio.”
“My biggest fear is that if she caught an infection on her lungs again like when she was five, it would be fatal.
“She has such a chronic disease that if she caught anything she could die, we need to take extra precautions now, time.”
Conn Brennan is 17 months old and is from Newbridge, Co.
Kildare. Conn is a twin and although tiny, he is mighty.
Conn makes friends wherever he goes but especially at the
Early Development Group, which is run by the Kildare branch of Down Syndrome Ireland.
Conn loves music and is currently working on his speech and Lamh signs. He is also spending a lot of time trying to get on his feet to stand.
Proud mum Marie Brennan told how Conn has to endure health issues like nobody else in her family.
Marie said: “My son Conn and his twin brother Ruairi came into the
it’s a worrying
‘‘
I think this drug will save her and prolong her life and give her a better quality of life
world a little early at 36 weeks in January 2019, much to the delight of our family and their two big sisters Roise and Doireann.
“Conn is just like his siblings in many ways and he is usually right in the middle of the mayhem with his brother and sisters.
“However, as Conn was born with Down Syndrome, there are some things he has to work a little harder at, and he has had some health issues particularly when it comes to feeding, as he aspirates food and liquid into his lungs.
“At the moment, he eats pureed foods and drinks only breastmilk and is doing very well – in fact, he relishes meal times and I always have to keep an eye on the twins just in case his best buddy Ruairi is sneaking his brother something he shouldn’t have.
“When the twins were born, we had a little bit of catching up to do as we didn’t know during the pregnancy that one twin had Down Syndrome.
The devoted mum told how important Down Syndrome Ireland is in her son’s life.
She said: “Down Syndrome Ireland has always been there to advocate for Conn and for Gary and I as parents and they really helped us bridge any gaps, as there was quite a long waiting list for early intervention services in our area.
“Conn, Ruairi and I attend the
Early Development Group, which is run by the Kildare branch of Down Syndrome Ireland weekly. It is run by video call currently due to Covid 19.
“The group has been great for Conn’s growth and confidence, he has come on in leaps and bounds with support and encouragement.
“This is also a brilliant place for Conn to socialize and also for me to spend some time with other parents who may be going through similar things or have the same concerns for their children.
“In addition, Olive Buckeridge from the head office of Down Syndrome Ireland started a weekly parent and toddler group for each branch via video call during lockdown to help our kiddies with their communication development.
“Money raised through the Woodie’s Heroes Fundraising Campaign will help Down Syndrome Ireland develop a new feeding programme, which will cost approximately €35,000.
“The provision of feeding workshops to parents and professionals is essential to ensure the early identification of dysphagia, signs of which include coughing, choking, chest infections, poor weight gain and breathlessness, often from birth or early infancy.”
Woodie’s Heroes campaign is back for the sixth year raising funds for four charities, CF Ireland, Down Syndrome Ireland, Autism Assistance Dogs Ireland and Childline. Woodie’s are calling on everyone to up their step count, whether that is at home or in store, and “walk to the moon” i.e. cover the distance of 384,400km!
■■See woodies.ie for more information.