How Jack & Jill Begun
On 29 February 1996…
Jack Irwin was born – a bonny bouncy baby. Two days later he suffered some invasive trauma in the hospital’s nursery.
While history does not reveal the immediate aftermath of this drama, it is probable that he died and was resuscitated. Certainly from that moment on, Jack could not swallow and was probably blind and deaf. His parent’s dreams were shattered and the heartbreaking task of keeping Jack alive began.
The senior pediatrician in the hospital was brutal but honest
Asked for a route map of care for Jack once he left their intensive care unit, it was made clear that there were simply no services in Ireland available in 1997 to a baby like Jack. He cautioned that Jack’s needs would threaten the marriage and certainly damage the childhood of his healthy brothers and sister. To escape this trap, he advised the only way out was to get him admitted to one of the children’s hospitals. Then and only then would the State have to take responsibility for him.
Spine chilling advice that resolved Jack’s parents to take action. Never again would any Irish family have to face such a horror
Jack lived for 22 months – a desperate and painful life. A mix of drugs, physio, postural drainage, seizures, reflux operations, gastronomy and suctioning. The only saving grace was that he was cosy and warm and nursed around the clock by a dedicated band of five nurses and carers from the neighbourhood.
His short life showed his parents the ideal way in which little children like Jack can be nursed. From their experience evolved the home respite care that has now been offered to over 1700 children and their families all over Ireland since 1997.
This leads to a situation where the Jack & Jill Foundation not only has to raise funding of up to €2.7 million per annum but must act as advocate for it’s families helping in securing a carer’s allowance, a medical card, correct housing, special equipment or a primary medical certificate.
How Jack & Jill Begun
Welcome to our world
It is a challenging world that many people never even know exists. Many people are blessed with healthy babies. For them, parenting is about feeding, changing, teething, and catching the odd snatch of sleep!
But for the parents of babies who are born with life threatening and severely debilitating conditions, parenting involves desperation and pain, punctuated by drugs, physio, seizures, and hospital operations. A long sequence of exhaustion, and often terror.
The Jack & Jill Foundation provides nursing care and support for children with severe neurological development issues, as well as offering some respite to the parents and families
This could be through home visits from nurses, with practical tips on how to access the services a child will need. Listening to what parents want for their child and making representations on their behalf. Bereavement support and an online forum for parents. Lobbying the Government and the HSE.
Jack & Jill also provides direct funding to families, enabling them to buy home respite care to give them a break. The Foundation cannot cure the children. But it can help to alleviate some of the difficulties that exist.
In a rich country like ours, why do our families have to struggle to be granted even the most basic entitlements?
The root problem of this is historic. The State has previously taken the view that children such as those cared for by the Jack & Jill Foundation would die, probably before their second birthday, and therefore were never taken onto the State’s books.
Thankfully this attitude is slowly changing and the Jack & Jill Foundation applauds this.
At all times, we are mindful of the isolation and loneliness that families experience and we pay particular attention to the needs and emotions of the healthy brothers and sisters who can so easily be overlooked.
People Behind Jack & Jill
Office Manager & Family Coordinator
Digital Communications Coordinator