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.