This October, Barry McArdle will take on the Dublin Marathon alongside his friends Daniel and Darragh Smith, raising funds to help the Jack and Jill Children’s Foundation support other families like his own.
Barry, who works as a Quantity Surveyor with McCabe Group in Cavan, has previously completed half marathons, but this will be his first full marathon. The group originally set themselves a fundraising target of €5,000, but the response has completely blown them away. Together, they have now raised an incredible €22,000 and counting for Jack and Jill.
The local community in Mullahoran, Cavan has really gotten behind the fundraiser, with friends, family and supporters rallying around the three runners in a way they never expected. For Barry, seeing that level of support has made the whole experience even more special.
Training for Dublin
Training is going well, with the group trying to get out together at the weekends for their longer runs and then fitting in the shorter runs individually during the week. Barry finds the long runs much easier with the company, and training together has become an important part of the build-up to marathon day.
For Barry, however, the challenge is about much more than running. Jack and Jill’s in-home nursing support has become an important part of life for Barry, his wife Sarah and their daughters Jenna and Vayda, giving the family valuable time while caring for Jenna around the clock.
He is now looking forward to getting across the finish line on the day and celebrating with Sarah, Jenna and Vayda, knowing that the money raised will help Jack and Jill support other families like his own. It is also Barry’s way of giving something back and saying thank you for everything Jack and Jill has done for his family.
Jenna’s Story
Jenna McArdle lives in County Cavan with her mum and dad, Sarah and Barry, and her baby sister, Vayda.
When Jenna was born in August 2023, everything appeared as it should. She was a happy baby and there was initially no indication that anything might be wrong.
However, as the months passed, Sarah and Barry began to notice that Jenna wasn’t reaching some of the developmental milestones expected for her age. She wasn’t crawling and, compared with other babies her age, she seemed to be progressing more slowly.
Jenna began attending physiotherapy and, at first, it was hoped that she was simply developing at her own pace. When she was around a year old, her parents brought her to a consultant paediatrician in Cavan. The doctor felt that while Jenna’s development was delayed, she was functioning more like an eight- or nine-month-old child than a twelve- to fourteen-month-old.
A Life-Changing Diagnosis
A series of blood tests were carried out and sent away for analysis. When the results came back, Sarah and Barry were asked to return to the hospital to discuss them. They had been told there was no need to bring Jenna along, but childcare arrangements fell through, so she accompanied them to the appointment.
Although the blood tests did not reveal any clear answers, the paediatrician remained concerned. Having observed Jenna closely, he felt there could be an underlying neurological condition and referred her to a neurologist at Temple Street Children’s Hospital.
Further investigations and testing followed. Then, in January 2024, Sarah and Barry received the diagnosis that Jenna had Rett syndrome.
Rett syndrome is a rare genetic neurological disorder that primarily affects girls. It impacts brain development and can lead to severe challenges with movement, communication, coordination and everyday functioning. Many children with Rett syndrome require lifelong support and care.
For Sarah and Barry, they finally had answers, but they also faced an uncertain future and the reality of the complex care Jenna would need.
The Difference Jack and Jill Makes
The family were receiving support through Enable Ireland, and it was there that they were introduced to the Jack and Jill Children’s Foundation.
Today, Jenna is thriving in her own way and continues to bring enormous joy to her family. However, her condition means she requires round-the-clock care. Jenna is not yet walking or talking and has very limited use of her hands. She relies on others for all aspects of her daily care, including feeding, dressing and changing.
The support provided by Jack and Jill’s in-home nursing care has made a profound difference to family life.
Having a qualified children’s nurse in their home gives Sarah and Barry something every parent of a child with complex medical needs needs: time. Time to catch their breath. Time to spend together as a couple. Time to enjoy simple things that many families take for granted, whether that’s going out for a meal, spending quality time with their daughters or reconnecting with friends and family.
Running for Jack and Jill
For Barry, that support has also given him the opportunity to continue pursuing one of his passions: running. This autumn, that passion will take him to the Dublin Marathon start line, where every mile will help raise funds for Jack and Jill and for other families facing similar challenges.
While Jenna’s journey has not been the one her family expected, they face each day together with strength, determination and hope. With the support of Jack and Jill, they know they don’t have to do it alone.
