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

Caring for a child with a serious neuro-muscular condition is a never-ending commitment, Jack McCrystal’s mother said.

They regularly travel to London for appointments with specialists and their Co Londonderry home is full of medical equipment.

Her son needs a wheelchair to get around and is fed using tubes but was full of joy and energy during a regular visit to the Northern Ireland Children’s Hospice.

Each child’s name was written outside their room in a style appropriate to youngsters.

The centre appeared less institutional and more playgroup in atmosphere, using bold and colourful decoration, while children’s books provided entertainment.

Using the hospice helped Jack’s parents realise others were going through a similar experience.

His mother, Maura McCrystal, said: “We took great comfort knowing that we were not on our own.”

The respite care means the 10-year-old’s parents can go out to have dinner together or a weekend away and spend time with his older brothers.

Jack’s mother said: “Coming here allows us to recharge our batteries.

“It is constant with Jack, it is 24/7.

“You are running to appointments. We have to go to London every 10 weeks for an appointment.”

Good specialist care while his parents are resting is critically important.

Any blockage to Jack’s feeding tubes would require a potentially life-threatening visit to an operating theatre.

His mother said: “Without this service I don’t know where we would be at.

“We depend so much on this to give us the respite that we need, without that, mentally it would be detrimental to our health and to Jack’s brothers’ health.

“It is good that we have this facility here, there is nothing else out there.

“Without this service a lot of families would be suffering.”

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