A DULEEK mother who lost her 16-year-old daughter to Cystic Fibrosis says that setting up an annual fundraising event to honour her memory and give hope to others living with the condition has helped her through the grieving process.
Ann Noone's daughter Kelley sadly lost her fight to CF just a few months after completing her junior cert. Now in its 6th year, the Duleek 10k Remembrance Run takes place this Sunday, April 28th. The event has raised over €120,000 for CF Ireland so far and has helped the heartbroken mum to come to terms with her loss.
Despite the debilitating illness, Kelley lived her life to the full as Ann explains:
“Kelley was so full of life, she was into everything. She was gorgeous in every way inside and out. She loved drama and dancing, Gaelic and soccer. She took part in everything you can imagine. Having CF did not define her. It didn't slow her down in any way. Like every other person with CF that I have ever met, she was determined and strong and had such a positive outlook despite the challenges she faced."
Kelley wasn't diagnosed with CF until she was two years old and Ann believes lost out on vital time that she could have been receiving treatment,
“She wasn't diagnosed until she was two so, unfortunately, there was a lot of damage done before that. We have eight children, four boys and four girls. Kelley is the only one that had CF so we were lucky and unlucky you could say.
"As a baby, she had been unwell with infections but the diagnosis did come as a major blow. Nowadays babies are diagnosed at birth and have a much better chance of a better quality of life. I often wonder whether the outcome could have been different if it was today,” reflects the mum of eight.
The young Duleek girl had her challenges but was determined to get on with life.
“Kelley was a very ordinary 16-year-old girl who loved make-up and going out with her friends but she was also so courageous. She was a very private person and a lot of people didn't even know she had CF. She just wanted to be the same as everyone else and wouldn't have people fussing over her.
"She never complained once. It was like she didn't have CF. She worked very hard to keep healthy, she was up at 6 am to do her physiotherapy and take her nebulisers. She didn't spend a lot of time in the hospital because we did all of her treatment at home.”
Kelley went into the hospital for a routine procedure but her condition deteriorated as a result and she was placed on oxygen for a number of months after. Ann says that despite knowing her daughter was ill, nothing could have prepared her for losing her daughter.
“She was assessed for a lung transplant but she was too ill by that time. She died 12 weeks later. We didn’t think we would lose her that quickly because she had fought for so long. To us, it was sudden because even though her lung functions were very low she just battled on. We were lucky in many ways because we were by her side when she passed but it felt like someone had come in and taken her away.
"Even though you know your child has CF, you are never prepared to say goodbye, nothing can prepare you for the devastation that follows.
The Duleek mother says that coming to terms with Kelley's passing is an ongoing process.
“You are left with a hole in your heart that needs to be repaired but nothing can repair it. The only thing that does help is time. I disagree when people say that time doesn't heal, I think that it does make you stronger.
“As a family, we were devastated. I just wanted to die with Kelley. We spent five years after crying and trying to come to terms with the fact that we would never see her again. She was so loved. She made us very proud. She did her junior cert and got eight honours even though she was very ill.
“It's even sometimes strange hearing myself talk about her in the past tense. When you hear yourself saying the words you acknowledge that it is your story but you don't want it to be your story.
“When you lose a child, for a long time after, you don't really live, you exist. You just take little baby steps, you move very slowly and every single day, in the beginning, is so long. I actually can't even describe in words how you feel. Thinking back you wonder, how did we ever do it.”
Ann has been involved with the Drogheda branch of CF for 26 years. in 2013, five years after Kelley's passing, the Noone family found the strength to organise a fundraising event to pay tribute to their daughter and sister and cousin Cathy who also passed away from CF.
“Kelley and Cathy were so full of life and fought so hard to live and we needed to honour that. In those dark years after she died, I could hear her in my mind saying, 'come on mammy, get up and get on with it,' that's the kind of person she was and that's exactly what she'd say,” laughs Ann.
“All of my children, my husband Kevin, extended family and the community of Duleek have all made it so successful, not to forget all the local clubs and groups who help and support. All of the money raised goes directly to CF Ireland. CF sufferers depend so much on fundraising. €1.5m needs to be raised every year to provide the necessary care and facilities. The money raised for our run helps to fund all the grants for CF patients and a new inpatient unit in Beaumont Hospital.
“We are hoping to make this a national event. Last week we had 16 different walks all over the country and next year is going to be bigger and better.
The idea behind the event was to bring people together to remember Kelley and her cousin Cathy who also sadly passed away from CF. Ann also wants to inspire other people with the condition.
“We want to celebrate all that's great about CF. It's important to send a message of hope to those affected by it. Kelley's birthday is on 30th April so it's a way to say happy birthday to her in heaven as well. All of Kelley's cousins, relations and friends take part in the run and come together to share stories and memories about her that are very precious.
“One girl last year, said 'thank you for allowing us to have the opportunity to remember Kelley.
“It's like Kelley is still here beside me, I feel her presence every day and I know she'll be with us on Sunday.”
For further information on the run go to the Duleek Cystic Fibrosis 10K mini marathon Facebook page.