Th e Jac k an d Ji l l
C h i l d r e n ’ s F o u n dat i o n
B R I N G I N G E X P E R T I S E A N D C A R E TO T H E C H I L D R E N & FA M I L I E S W H O N E E D I T M O ST
When you take your child out of the hospital, you are in a bit of a
“ sea of the unknown. It is a very scary place to be when you are
there with this beautiful little bundle who you care so much about
and yet you are terrified. How will I cope? How will I manage? Jack
and Jill is a lifeline for families. You aren't on your own.
”
— Tina Priestley, mother of Bobby Priestley who received care from the Jack and Jill Children’s Foundation
l e ft to r ig ht: A da m , D e r e k , B o b by , S a r a h - J a n e , T i na a n d H a r ry P r i e st l ey
connect 2011 | 20
To families whose children have neurological development issues or brain damage in
Ireland, the Jack and Jill Children’s Foundation is a rare ray of hope and respite. It provides
in-home care to children up to the age of four through a team of nurses who are matched
with families and their unique needs. Parents are able to provide for these special children
in the very place they want to be, together at home.
Foundation.
“My wife and I swore that no other family in Ireland should go
through this again,” said Jonathan Irwin. “When we started,
the Government had no database on the number of children
with such needs in Ireland. Today, we have settled in around
320 families. We bring early home nursing and respite care to
babies where ever they live in Ireland, in their own homes. It
doesn't matter if they are in Donegal, Wexford, the inner city,
the Traveling community. They will be looked after by Jack
and Jill.”
Jonathan knows first hand how overwhelming it is for
families and explained how Jack and Jill steps in to help. “You
have to imagine the conditions these families are in. Dreams
and illusions have been taken away. They are traumatized and
Jack Irwin,
the inspiration
exhausted. They are desperate and isolated. We are a lifeline
for the Jack and through the teams that we provide to look after these babies.
Jill Children’s We bring calm. We bring professional advice. The parents have
Foundation
someone they can trust implicitly. I get phone calls often from
mothers because they know I have been through that valley.”
Founded in 1997 by Jonathan and Mary Ann Irwin after the loss The program provides funding to families so that they can
of their young son Jack, the organization has today helped over bring in expert care that allows parents to take a break and have
1,300 families across Ireland who have no other access for this a brief respite from the rigors of caring for children with acute
extraordinary level of care. The Foundation offers support, needs. Though the program officially assists families with chil-
covers nursing costs, and provides guidance in navigating the dren up to the age of four, services for those over the age limit
complex world of having a severely ill child in Ireland. In 2010, are still needed and the organization has risen to the call. “I
The Ireland Funds provided a $50,000 grant to support the have 44 children under our care who are over our threshold of
work of The Jack and Jill Children’s Foundation and the Young 4 years old,” Jonathan admits. “But I simply can't just drop
Leaders Run donated a portion of the event’s proceeds. Con- these families into the void, because they are otherwise not
nect magazine visited their headquarters in Johnstown to speak equipped to care for children with intensive needs. We have
with founder Jonathan Irwin and Tina Priestley, one of the never said no to a child and we have never turned a family
many mothers who has benefited from the organization’s serv- away.”
ices. When asked how they could advance their work even fur-
The Irwin family welcomed a healthy baby boy in 1996. ther, Jonathan readily speaks of his frustration with the fact
Shortly after his birth however, he suffered a trauma and was that the organization’s model is poised to save the state money,
brain damaged. Jonathan and Mary Ann took Jack home blind, yet they need the funding to do it. The Jack and Jill Children’s
deaf and unable to swallow on his own. Their family soon Foundation would like to offer far more care in Ireland. “If we
experienced a second trauma: the fact that there were very few look after a baby it costs €16,500 a year. If the State looks after
services in Ireland to address the needs of a child with Jack’s the same baby it will cost them €146,000. Our organization
unique medical needs. could save the State thousands of man-hours and can offer
Jack lived for 22 months at home, thanks in part to an things the State can never give.”
incredible community response from neighbors, friends, and
those working in the Irwin’s business in Co. Kildare. It was the
difference that this in-home care made in Jack’s brief life that
inspired the Irwins to establish The Jack and Jill Children’s
connect 2011 | 21
B o b by ’ s S to ry
The Priestley family has experienced the profound sadness of
learning before birth that a baby is not well. “It was determined
when I was six months pregnant that he had severe health
issues,” explained Tina Priestley, mother of Bobby who was
diagnosed with Tetrasomy 9P. “He was in intensive care here
in one of the national hospitals in Ireland for three weeks and
then I was sent home. We were given a little packet of feeding
tubes and syringes and I thought, ‘Oh my God, what do I do
next?’ He came home on a Monday, I got a visit from the Jack
and Jill nurse and by Friday I had a pediatric nurse helping me
in my front room.”
Families of a child with special medical needs know
that the condition affects the whole family. Tina readily
acknowledged that the services of her Jack and Jill nurse, Mary
Jo, helped the whole family. “It’s this gift that you get. It’s a gift
box of hours. It is time to spend with your other children as well.
All your children need to feel special not just the one with
special needs. It gives you time to just get a rest. If you can't
sleep for days on end, you will crumble under the strain.”
Today, Tina volunteers with the Foundation and explained
the challenges that the organization faces every day. “Jack and
Jill depends on charitable donations for over 80% of its budget.
With the recession, donations are down and there are more and
more families in Ireland in need of assistance. There is a huge
shortfall of funding. Some families may have to have their hours
cut. This isn’t money that is being wasted—it is buying precious
hours for sometimes terminally ill babies to have time with their
families, to have their cuddles and their love.”
Sadly, Bobby lived 13 months before he passed away.
Tina explained what Jack and Jill provided far beyond just the
care Bobby received during his lifetime, “Without that care I
would not have had the courage to take Bobby home from the
hospital, he would not have thrived the way he did and we would
not have been able to enjoy Bobby for those 13 months for the
time he was with us. My journey with Bobby is unfortunately
over but I have wonderful memories of him. I have memories
of him at home with our kids, with our neighbors, with
our friends, with our family, with his granddad and granny. Jack
and Jill helped me have these wonderful memories and I will
always be eternally grateful to them for that.”
Above: Some of the extraordinary nurses who work with the 320 families served by
the organization each year
connect 2011 | 22
“We have never said no to a “This isn't money that is being wasted—it
child and we have never is buying precious hours for sometimes
turned a family away.” terminally ill babies to have time with their
— Jonathan Irwin, founder of the Jack and Jill families, to have their cuddles and their love.”
Children’s Foundation — Tina Priestley, mother of Bobby Priestley who received care from the
Jack and Jill Children’s Foundation
To l ear n mor e about th e Jac k an d Ji l l
C h i l d r e n ’ s F o u n d at i o n
p l e a s e v i s i t www.irlfunds.org/connect
connect 2011 | 23