Nurse Mary Joe on 20 year 'Jack and Jill' journey
Twenty years ago, Mary Joe Guilfoyle gave up a steady and secure nursing job to join forces with a man who wanted to better the lives of seriously ill Irish children and their families.
Following the tragic death of his son Jack, Jonathan Irwin set up the Jack and Jill Children’s Foundation with the aim of providing support and respite services in the family home.
After one meeting with Irwin, the Co Laois woman took a leap of faith and became the fledgling charity’s first liaison nurse, offering support services, nursing respite packages, practical information and sometimes simply a cup of tea or a hug.
As she offered her skills and knowledge to families all over Ireland, Mary Joe could never have imagined that one day, she too would be taking the same path. Five years ago, her little girl Emma was struck down with a life-threatening illness which she continues to recover from. It gave her, she says, a “deeper understanding of trauma” that those she works with experience.
Today, as Jack and Jill celebrates twenty years helping the children who need them most, and to mark International Nurses Week (May 6-12) some of those families have spoken of the profound effect the charity and its staff have had on their lives.
Families like Tina and Derek Priestley from Naas in Co Kildare, who said their heartbreaking goodbyes to their 13-month-old son, Bobby, at home with a Jack & Jill nurse by their side.
“He lived for just 13 months but he made quite an impact,” said Tina as she fondly remembered her boy. “Boy, did he pack in all the love he could into those 13 months.”
The family was told that Bobby, who was born with a rare chromosomal disorder and numerous other health issues, may not survive beyond birth. The couple were overjoyed to eventually bring him home to “his protection team” siblings Sarah Jane, Adam and Harry.
“It was wonderful, but after the first day at home with him it became apparent that I was going to need help.
“Mary Joe called by the day after I first rang, and I had a paediatric nurse helping me two days later. We were given 40 hours of nursing care a month, which meant I could spend family time with the other kids.”
Tragically, Bobby suffered a stroke during surgery and his care became palliative. Derek’s father Bert died suddenly just a week before Bobby, in a chaotic and overwhelming time for the family.
“That’s when Mary Joe hit her stride. She got a SWAT team of nurses together. Her attitude was: ‘We can’t change this but we’re going to hold your hand and help you get through it’. It was very overpowering and you feel yourself getting sucked under, but she was our life raft.”
The Moloney family in Leixlip have also experienced the charity’s kindness. Their little girl, Aisling, was born with a very rare form of Mitochondrial disease called PDH, which causes numerous physical and developmental issues.
The family have benefited from the services of a number of Jack and Jill staff, including Mary Joe. “She’s a force, but in the best possible way,” mum Cliona smiled. When Mary Joe arrives at the door she throws her arms around you and by the time she leaves you feel so much better. You never feel like you’re on the clock.
“This is a journey for us and there’s a great comfort in knowing that she's there and you can check in with her. She’s been a great emotional as well as practical support.”
Little Lillian McCarthy has a neurological condition called polymicrogyria which means she is visually impaired, has global developmental delay and epilepsy. Her big sister Maisie dotes on her, as do parents Rachel and David.
“The charity has been absolutely vital to us, it’s been a crutch for us, a holding hand along the way,” said Rachel. “Mary Joe got it. She knew how it would impact on us as a family. She gave of confidence and support after a difficult hospital meeting or a tough day. She is very good at encouraging you and empowering you.
“We also have two beautiful nurses who provide respite care for us in our family home, which means fewer hospital visits, where you could be separated as a family for two weeks at a time. They allow us to be a family.”
Despite all of the affection felt for her by various families over two decades of care, Mary Joe is not a woman who’s inclined to blow her own trumpet.
After leaving school, she briefly worked in a day centre for children with special needs, which she loved, and embraced the opportunity to join the charity later in her nursing career, though she jokes that Irwin calls her “his lunatic nurse” for giving up a full-time job to make the leap.
Her work involves meeting the families, assessing their needs and setting up home respite care with Jack and Jill nursing staff. “When you go into the family home, it’s a private place and you become like an extended member of the family,” she explained. “Families want to be at home, in many cases they’ve been in hospital for weeks and weeks.
“The family is at the absolute centre of what we do, and you need to listen to the family and see what the issues are for them.
“I love going into homes and having a cuddle with these special little people. I never leave without my obligatory cuddle because those cuddles are what keep me going.”
Mary Joe could never have imagined that she would face the same fears as many of her families. Five years ago, her daughter, Emma Tynan, suddenly became critically ill with a non-specific illness called FIRES syndrome, leading her to develop serious and uncontrollable seizures.
She fought for her life in Temple Street Hospital for six and a half weeks before they eventually dissipated. The condition left Emma initially unable to walk or speak and she spent a year in hospital and having rehabilitation treatment.
“She’s back in school full time with a special needs assistant and continuing to make steady progress,” said her proud mum.
“It (her illness) gave me an insight that I just had to use to my advantage. It gave me a deeper understanding of trauma and people’s reaction to trauma.”
Mary Joe will continue to work with the charity to the delight of its founder, Jonathan Irwin.
“How I ever managed to convince this wonderful, kind hearted, calm, strong, experienced, hugely qualified nurse to pack up her job at Temple Street and to take a chance on Jack & Jill with me, a broken down old horse dealer who knew nothing about charity, I'll never know,” he said.
“She has an inbuilt reassurance about her that gives everyone - parents, colleagues, health economists and dare I say politicians- more confidence and courage to get on with things and to design and deliver a better service around the child, a bespoke service around the whole family, never ever forgetting the siblings and the impact having a brother or sister with severe disabilities can have on them. I thank her. I salute her. And I count myself lucky for finding her in the early days.”
To mark its 20th anniversary, Jack & Jill is asking people to host an afternoon tea party, with every €16 donation funding one hour of home nursing care for a sick child, with registration open on www.jackandjill.ie