'I've never felt alone' - CF mum

Redhills woman LORRAINE O'NEILL is a lady who is widely regarded by everyone man, woman and child in Co Cavan for her tireless work in raising funds for Cystic Fibrosis. Following her recent win of the Cathaoirleach’s award 2016, ULTAN SHERRY caught up with Lorraine to find out what motivates her and how her daughter Mia, who lives with CF, is doing...

“I’m very very thankful to the county for everything they’ve done. They’ve helped me. I’ve never felt alone. They were there to help me not just in fundraising but just as a shoulder.”

Mia was diagnosed with Cystic Fibrosis in 2009 and fighting to achieve better services and treatment for her daughter is what has inspired Lorraine to do some incredible charity work over the last seven years.
Mammoth fundraisers have included marathons, cycles and mountain climbs. Over the next while, that drive will continue for people like Mia.
“We have over 100 ladies going up to Dublin to do the Ladies’ Marathon, which is being organised by a few mothers,” Lorraine informs me. As well as that, there’s a tractor run taking place in Ballinagh on June 26 and a charity cycle sponsored by Skoda on July 17.
To date, Lorraine and others have raised some €450,000 for the Cavan branch of Cystic Fibrosis and towards new facilities for patients at Cavan General Hospital.
At this point, the most important question to ask is how is Mia? “She hasn’t been hospitalised in over 12 months. She’s in great form. Every day there’s some wee problem but we usually rectify it,” says Lorraine.

Normal seven year old
Despite her condition, Mia can lead a normal life like any other seven year old and is extremely active too.
Her mum says that what’s most important now is that if Mia does require hospitalisation, there are now new facilities at Cavan General for CF patients.
“When we first went to Cavan General there weren’t isolated CF rooms, we were in a public area. We’ve got two designated out-patient rooms now and, at the minute, we’re building two dedicated in-patient rooms, which means that CF patients are safe at all times,” explains Lorraine.
Contractors are on site at Cavan General Hospital developing those new high-spec, in-patient rooms, which are expected to be complete later this year.
The development and opening of two out-patient rooms with a separate designated area for CF patients in 2014 was done as a part of a joint initiative between CGH and the Cavan branch of CF Ireland.
For Lorraine as a mother, these facilities are vital to Mia.
“When she gets sick, things do change a little. That’s when you realise, you’re dealing with a life-threatening disease. She could be in the hospital for up to 14 days,” she tells me.

'I didn’t expect it’
Asked of her recent Cathaoirleach’s award, Lorraine gushes: “I didn’t expect it in the slightest. To be honest I was delighted with the nomination!”
Of course, Lorraine nonetheless acknowledged the award with pride. “I think it’s fantastic that CF is out there in the public eye and people are aware of what we’re doing in Cavan,” she adds.
That awareness for Lorraine’s work was shown by people giving her money for the Cavan branch of Cystic Fibrosis on that very night. “I said at the awards that there wasn’t a person in the room who I hadn’t got a euro off, or two euro or five euro. This woman came up to me at the end and handed me €50. She said 'well I didn’t help you yet so there you go!’ I walked out of the Cavan Crystal with €75 from people who decided to give money to me on the night,” she marvels.
Perhaps what was more remarkable was Mia’s reaction to her loving mother winning the award. “Mia said 'yeah great. Give me money for the vending machine!’” laughs Lorraine.
This is not to say though that Mia doesn’t acknowledge what her mother has done for her and many others like her too. She does.
When she made a video one day showing everyone how to use an acupella and the exercises she does as part of her treatment, Mia said “now anyone out there with CF, my mammy will be running for you so don’t be worrying!”

Thankful
Towards the end, I asked Lorraine how she felt about everything she had achieved in the seven years since Mia’s diagnosis and how that little girl felt about all that her mammy had done for her. “I’m very very thankful to the county for everything they’ve done. They’ve helped me. I’ve never felt alone. They were there to help me not just in fundraising but just as a shoulder,” she replies with tears in her eyes. There is an old proverb that says you’ll know who your true friends are when something bad happens to you. Lorraine O’Neill knows who her true friends are. It’s the whole of Co Cavan and beyond. They have been there for her and Mia on every step of their rocky road since Mia’s diagnosis in 2009 and will be there for them into the future.
Labe Sifre once sang that there’s “something inside so strong”. For Lorraine, it’s her determination to carry on and make a difference to the lives of so many with CF including her loving daughter.
For Mia, it’s her courage and determination to live each day like a normal child in spite of her condition.

About Cystic Fibrosis
Cystic Fibrosis is a genetically inherited disease that primarily affects the lungs and the digestive system. Ireland has the highest incidence rate of CF in the world - approximately one in 19 Irish people are said to 'carry’ one copy of the altered gene that causes CF.
CF Ireland (CFI) is a voluntary organisation that was set up by parents in 1963 to improve the treatment and facilities for people with Cystic Fibrosis in Ireland. CF Ireland also co-operates with medical professionals to give maximum assistance to both parents and children/adults with Cystic Fibrosis.
See www.cfireland.ie for more