Sick NI child 'has never tasted food'

Jack McCrystal, 10, has a neuro-muscular disorder which means he is fed through a tube and uses a wheelchair.

His mother and father, Maura and Ronan McCrystal from Draperstown in Co Londonderry, depend upon the Northern Ireland Children's Hospice to provide regular specialist respite care.

READ: Caring for a sick child a 24/7 commitment, says mother

Prime Minister Boris Johnson recently announced millions of pounds of extra fundIng for hospice services in England, but nothing was set aside for care across the Irish Sea.

Discussions are ongoing on potential additional support for the Northern Ireland hospice sector from public funds, Stormont's health department said.

Mrs McCrystal told PA media group: "Why should we not get that over here - are our kids not as important as the kids over in England?

"It makes me so cross, why do we have to miss out on that?

"I just feel like we don't matter because the funding has not been provided for Northern Ireland - it is not fair."

Jack cannot walk and weak muscle tone affects his stomach muscles, so he is tube-fed for 20 hours a day.

His mother said: "That part of things is hard, while we are sitting eating a meal we would love nothing better than to see Jack eating as well.

"That muscle condition (Ryr1 Myopathy) does not allow him to absorb food, he has been tube-fed from when he was about an hour old, that is all he has known - he has never tasted food."

The hospice provides a safe environment for Jack so his parents can gain some respite from the 24/7 demands of caring for their son.

Earlier this year, an additional £25 million of funding was directed to support children's hospices in England, and more recently a further £25 million announced by the Prime Minister.

Demand for services in Northern Ireland is high and relative costs are rising.

Funding includes a mixture of state provision and charitable giving.

Stormont has not sat for more than two and a half years and there are no ministers to introduce any increase corresponding to England.

The McCrystals first came to the North Belfast-based hospice more than 10 years ago, when Jack was nine months old.

He was born extremely sick and doctors did not give his parents much hope of the infant surviving.

His condition was a mystery which went undiagnosed for a decade.

His mother said: "We did not know what the future held for us or for Jack. We did not know how long we were going to have him, if it was just days or weeks, the doctors could not tell us anything.

"We became nurses ourselves overnight, having to learn how to do feeding pumps and work oxygen and saturation monitors, our house turned into a mini-hospital when Jack appeared."

Stormont's Department of Health said financial pressures across the health and social care system are well documented.

"The Department of Health faces many competing demands on its already-constrained budget.

"We are of course very mindful of the vital services provided by hospices in Northern Ireland.

"Discussions are ongoing on potential additional support for the NI hospice sector from public funds."