Soon to step down as CEO of Jack and Jill, Jonathan Irwin is still questioning WHY parents of severely sick children still have to fight for every little support.
"It's unbelievable," Jonathan told MummyPages when commenting on the HSE's 30-minute rule in an interview to launch their Christmas appeal.
The rule means parents or guardians, who avail of home nursing care, cannot leave their house for more than 30 minutes while their child is being looked after.
"If you live in, say Donegal, it's virtually impossible to even collect other kids from school," the 75-year-old, who is to move into the role of chairman in January, said.
"It seems to me to be offensive to the paediatric nurses as if they are doing something wrong - and it's imprisonment for the parents."
With Jack and Jill, the time families have with their nurses is organised between themselves, Mary Joe Guilfoyle - the charity's first nurse - explained.
"It's about what suits the family best."
"Jack and Jill gives the gift of time to do the normal things that others take for granted, like Christmas shopping or meeting a friend for coffee or taking the well children out to visit Santa, safe in the knowledge that their sick child is being well cared for at home.”
The 20-year-old charity cares for children aged 0 - 4 who may not be able to walk or talk, are tube fed, oxygen dependent and in need of around the clock care.
Typically, these are sick children who suffer from severe development delays as a result of brain damage, and Jonathan has spent a lot of time fighting for these families.
"I spend 60 percent of my time on advocacy: helping families get basics like a medical card."
At the moment the charity has 283 children under its care and needs to raise €3 million to help them continue their incredible work, which is what their Christmas appeal is all about.
#LEGGO Donate your unwanted Bricks to J&J & bring hours of extra nursing to our 280 children all over Ireland. Thank you so very much— Jonathan Irwin (@JohnJoedotcom) November 25, 2016
In addition to Christmas cards, books and afternoon tea vouchers for sale, the charity is also looking for Lego donations from the public, especially as families are busy with toy clear-outs pre-Christmas.
With less than 20 percent of its budget coming from the HSE, the charity relies on public donations now more than ever to keep going. If you are in a position to help, click here.