Jonathan Irwin, Founder & CEO, Jack & Jill Children’s Foundation

Jonathan Irwin has lived in Ireland for over 50 years, mainly working in the horse industry, as a stud hand, a blood-stock agent and an auctioneer and locating GOFFS in Kildare, whilst also creating Europe’s first €1 million sports event in the Cartier Million at Phoenix Park.  Over the years, he has also supported his wife Mary Ann in creating Lily O’Brien’s in Newbridge, another great Irish success story employing 150 people.

However, it is his fundraising and advocacy track record in the Jack & Jill Children’s Foundation, established by Jonathan and Mary Ann in 1997 based on their experience caring for their son Jack Irwin until he passed away at home aged 22 months, that Jonathan is best known for.  Since then, Jack & Jill has supported almost 2,000 children nationally from birth to 4 years old with severe to profound developmental delay, including end of life home nursing care for all children under 4 years of age.  During that time, Jonathan and his team have raised over €60 million while receiving just €6 million from the HSE.

The way it works is that the Foundation provides funding for up to 64 hours of home nursing care per month at a cost of up to €1024 per family and up to 80 hours per month for end of life care.  It operates 365 days a year, mobilising an army of 1,000 nurses and carers nationwide, and has no waiting list.  Families refer to the service as ‘the gift of time’, that is time to do the ‘normal’ things that everyone takes for granted like sleeping, working, shopping and looking after the healthy siblings.

Jonathan recently confirmed that he is running for the Seanad, having been nominated by eminent independents Dr. Harty, Fidelma Healy Eames, Mattie McGrath and Katherine Zappone.  His is a healthcare manifesto that focuses specifically on the money following the patient into the home, and supporting the carers in the process, and the location of the children’s hospital also high on his agenda.  In setting out his stall for running for the Seanad, Jonathan Irwin says that:

• “It’s not just about the economy, as the last government had to learn the hard way.  It is about how that economy fuels a society, at the heart of which is a healthcare system, for young and for old, that we can be proud of one day very soon.
• “If elected I would continue to shine a light on the flawed location that is St. James’ for the National Children’s Hospital and why locating the hospital in Blanchardstown makes much more sense in terms of access, expansions, cost and speed of build.  The St. James’ site buried in the middle of Dublin in a very congested city is to my mind another slap in the face for Rural Ireland and all those citizens living outside the M50.
• “Let’s face it, the tsunami that is the number of citizens over 65 years old like myself and how we will care for them, is here already and we can’t just run away, or ignore what’s happening.
• “I would make it my business to stand up for sick children particularly in relation to granting them their medical card in their own right in their own name, with no need to means test their parents.  All medical card should be granted on the basis on medical needs, not financial needs.  And that is a small battle we can win over the coming years.
• “I’ve always believed that charity begins at home, and the Seanad is the ideal chamber to challenge and debate why Ireland spends millions on overseas aid, money that we have to borrow and pay interest on, when our own healthcare system is failing people, relying on charities like Jack & Jill to prop it up.
• “With our succession plan in motion for Jack & Jill, with Hugo Jellett now in place as incoming CEO, I feel safe in the knowledge that I’m leaving Jack & Jill in good hands, although I will remain actively involved as Executive Chairman from January 2017, 20 years after we established this wonderful charity.”

Jonathan Irwin has been awarded Fundraiser of the Year (2011), Global Fundraiser of the Year (2011), Fellow of the Faculty of Paediatrics (2014), Knighthood of St Lazarus (2014).

Dr. Jimmy Sheehan is an Orthopaedic Surgeon and Engineer who developed the Galway, Blackrock and Hermitage clinics.

He is interested in Hospital design for many decades and has travelled widely examining facilities throughout the world. His expertise lies not just in the design of facilities but also the need for future developments with the passage of time as has been the case with the Blackrock clinic over the past 30+ years.

He served on the Board of Crumlin Hospital for many years in the past.

Dr. Fin B. Breatnach –

Medical Degree from National University of Ireland (UCC) M.B., B.Ch., B.A.O.

Member of the Royal College of Physicians, MRCP (UK).

Fellow of the Royal College of Physicians, FRCP (Edinburgh).

Paediatric Training in Ireland and the UK.

Oncology Training at Great Ormond Street Children’s Hospital, London.

First Resident Consultant Paediatric Oncologist in Ireland – single handed for 13 years.

Founder and Director of National Haematology, Oncology and Bone Marrow Transplant Centre, Our Lady’s Children’s Hospital, Dublin from Sept.1981 to June 2008 when early retirement taken.

Built infrastructure of current National Children’s Cancer Centre at Our Lady’s Children’s Hospital, Crumlin through fundraising and developed current service.

Member of the National Cancer Forum 2001 – 2007.

Former Vice Chairman, Board of Directors, Barretstown 1997 – 2008

Former Medical Director, Barretstown Camp 1994 – 2010

Former Chief Executive Officer, Barretstown Camp 2008 – 2010

Currently Member of the Board of Directors, Jack and Jill Foundation.

Currently Member of the Board of Directors, Their Lives Matter.

 More than 65 publications in the scientific literature on various aspects of childhood cancer.

Dr. Roisin Healy is a Paediatrician and Paediatric Emergency Medicine specialist.

She retired in 2008 after almost 20 years as Medical Director of the Emergency Department at Our Lady’s Children’s Hospital Crumlin. Training years saw her work in Dublin adult hospitals, then in Portlaoise, Castlebar, Ballinasloe and Liverpool with major periods in Temple St and Crumlin Children’s Hospitals and a defining  three years in the Hospital for Sick Children  in Toronto.

She is a founding member (2008) of the New Children’s Hospital Alliance, an advocacy group seeking the best possible National Hospital for Children and is working tirelessly to achieve that for this and future generations of children in Ireland.

I'm Donal's Dad, author of Donal's Mountain, How one son inspired a Nation, and a parent of a cancer child for four years.

Lover of life, board director of the Donal Walsh #livelife foundation and speaker for same.  Continuer of Donal's conversation and part of the #livelife project saving lives.

I am Aaron Daly, married to Joan and parents to  Sophia 10, Oran 5 & Suin 2.

We live in Dun Laoghaire and our daughter Sophia Has Cerebral Palsy,  Arthrogryposis, epilepsy & scoliosis. Sophia has been attending Our Children's Hospitals since she was 5 days old. She has had many surgeries ranging from straight forward botox injections right through to major Spinal Fusion. 

Sophia has been very sick on a number of occasions and due to the brilliant work of her team she has battled through.  We have spent countless nights in Crumlin, pacing the corridors, swapping shifts and hours moving cars, looking for spaces, or simply queuing to attend appointments, paying for overpriced and poor quality food in the packed coffee shops.

Maybe it sounds trivial but when you're spending a week in hospital, sleeping on the floor  then the simple things like parking, access and food all become very important. 

We know very well how Sophia's clinics have become more crowded and less frequent. We hear the moans and gripes of our Doctors and Nurses who are doing their best in a health system that is falling apart.

After a few years  of silent complaining with all the other parents we cannot believe the government's decision that  St. James's would be the new location for our hospital. We all agree that this is not the best location. This decision will  be one of the biggest failures by an Irish government, they are ensuring that future generations will experience the problems that we and past generations have endured. 

Poor access, no parking, no outdoor spaces are exactly why we need a new hospital. Families with Sick Children already have stressed lives and this decision will add unnecessary stress to all our hospital visits.

We choose to drive Sophia to A&E if she quickly becomes ill,  we had an incident when it took 45 min to get an Ambulance one morning while she was having her first seizure. She ended up in ICU for 3 days. If we have to get to St. James's hospital in an emergency then we hope that its not during rush hour.

Our government have cut our services, ignored our lack of facilities and failing healthcare. We don’t want to be fighting the system and we shouldn’t have to but we will in the hope that other families will not have the same problems that have been forced upon us.

We would like to think that everyone wants to speak up for kids with life limiting illnesses like Sophia, thats why it is so important that we get the decision changed and have our new hospital built in Connolly where we all agree would be the best location.

My name is Sam Hogan and I am Mum to Isabella age 5, who has a rare neurological condition called Aicardi syndrome and requires 24 hour care.

When Isabella was around 18 months, Sam set up the Extra Special Kids group to offer support to mums all over Ireland.  The group now has over 160 members who share a wealth of knowledge, experience, support and friendship.

Isabella attends Temple St Children’s Hospital, with regular appointments at least 10 times in a year as well as hospital admissions, visits to A & E, adding up to at least 30 days in any year minimum.

Sam and her family are very familiar with the challenges of attending a city centre hospital with poor access and limited parking, and believes the Connolly site would “tick all the boxes” and would be a “fairy-tale” for the sick children of Ireland. 

Valerin O'Shea has been working on planning issues in Dublin City  for nearly 20 years in a voluntary capacity.  Her focus has been to promote proper planning in the public interest.  She sits on the Dublin City Council Strategic Policy Committee for Planning and International Relations.

Valerin has made representations on many major planning applications in Dublin including the proposal for the enormous development on the Jury's/Berkeley Court site Ballsbridge; the Carlton site proposal on O'Connell Street which incorporated the Moore Street National Monument; the Liberty Hall application and of course the proposal to build the National Children's Hospital on the Mater Hospital site. She has felt passionately about the location of the National Children's Hospital since the clearly misguided selection of the Mater site and has presented strong planning arguments to An Bord Pleanala against the equally misguided St. James's site.     

Her motivation has always been a strong belief in the need for an objective voice on behalf of the public to counter the many vested interests that so often hold sway.

Laura Haugh is spokesmum for MummyPages.ie, home to an online community of over 700,000 mums.

Laura has a gift for easily relating to and providing grounded logical advice to meet the diverse challenges that face mums and families today. With two young children James (6) and Lucy (4) she has obvious practice as a mum herself and can confidently sharing her own unique parenting insights and those of the wider MummyPages mum community. Her son James lives with a brain tumour and so she can readily identify with the challenges facing parents and children during stressful hospital visits and lengthy stays.

Adept at understanding the needs of the media, Laura combines significant experience from working with the press for 16 years through senior in-house PR roles with that of her public speaking engagements.

Laura has a talent for writing and working with the media and appears regularly in television, radio and print media to share her insight and experience as a mum and woman in business. Laura is quoted almost daily in the national press in her spokesmum role for MummyPages and has contributed to industry reports and Government workshops on a wide range of topics.

MummyPages is part of Sheology – a digital publishing company who excel in reaching women online in Ireland and the UK.

Tina Priestley is a mum of four from Naas in Co. Kildare.

Her youngest son Bobby was born in 2008 with a rare chromosomal disorder and regular hospital visits became part of everyday life for the family. These varied from in-patient, intensive care, A & E and outpatient appointments. During her sons life the family received home respite care from the Jack and Jill Children’s Foundation. 

Following Bobby’s death Tina has been an advocate for the families of sick children and is an active campaigner in the quest to have our National Children’s Hospital built in an accessible sensible greenfield location with room for future expansion. To this end she has written to almost 2000 ‘Jack and Jill’ families outlining her concerns over the proposed St James’ site. 

Tina is the parents’ representative on the National Development Committee for Children’s Palliative Care since 2012 and volunteers as a media spokesperson with the Jack and Jill Foundation.  She is also a member of the Family Forum for the development of the New National Children’s Hospital.

Keith Kissane is the father of Lincoln. Their home is in Barna Co Galway. Lincoln is 2 years of age and has been diagnosed with a very rare genetic disorder that only affects about 800 people globally.

Lincoln presented with symptoms from his early months, so Keith and family have seen firsthand what the current services are like for the sick children of the nation along with the trials and tribulations that are involved with travelling to Dublin from the west to see specialists.

As a result he has been a strong voice for Connolly as the best possible location for the New Children’s hospital and has met with politicians head on to make sure these views are heard.

My name is Aisling McNiffe and I am mum of two children, Molly aged 12 and Jack aged 10.

We travel from Co. Kildare, Ardclough near Straffan. Molly (12) my daughter does not have special needs but has a mild heart condition and a hernia so she sees Cardiology and the GI team.

EVERY parent in Ireland needs to realise that this hospital is vital for EVERY child not just the frequent flyers!! So it has to be done right!

Jack (10) my son has Down Syndrome and a very rare syndrome called CINCA. He is very complex medically, he requires 24 hr nursing care. He was on oxygen for over 3 years and is totally peg-tube fed around the clock.  He wears nappies, is non-verbal and cannot walk. He uses a wheelchair. He is immune suppressed and currently on 18 meds daily. He is a Graduate of The Jack & Jill children's foundation. He spent over 3 years in Crumlin cardiac wards and in and out of ICU before he was 3 and a half. He has spent much more time since as an impatient too.

We have also been to Great Ormond street hospital, London, twice so I have seen better facilities than we have here. Good for comparison.

Jack attends both Crumlin and Temple street hospitals. He is under over 10 teams in Crumlin and sees a neurosurgeon in Temple st.

As the parent of a child who has spent long spells in hospital I can tell you comfortable areas and green areas are a priority for families. We didn't even have a kitchen nor a bathroom on the ward where Jack spent over 2 years. I kid you not. Parent's accommodation is like a room in a prison. It's very hard to remain upbeat when you have a seriously sick child and nowhere to get a decent lunch or dinner or go for a breath of fresh air/ walk. A playground would be lovely for both patients and siblings.

Cafés and canteens need to supply proper healthy meals to parents at affordable prices. They need to be open and accessible. Also for people coming for outpatients appointments.

The other issues are access and parking. If we can't get to the hospital then there is no point as I know myself minutes matter. It's a matter of life or death. Jack has had to be blue lighted to Crumlin twice and I have had to rush him in on numerous occasions. Access is KEY. Parking is another huge priority  especially for wheelchair users. We are frequent flyers and parking should be plentiful and free. There need to be adequate parking spaces and they ALL need to be wide to access children in car seats and to put them into buggies/wheelchairs etc.

I would like parents of the future to have a nicer experience in hospital than I had. I was very isolated and conditions were third world. Sleeping on the floor is not good for an anxious mum who has just given birth so beds in every room are another thing that shouldn't be a luxury.

Also my son has numerous hospital acquired bugs and has always been in isolation but there is no bathroom attached? Ensuite bathrooms are a must.