Brave Cork boy given week to live defies odds to enjoy Christmas with family

Nine-year-old Jamie Murray from Fermoy honoured with a bravery medal courtesy of the Garda charity Little Blue Heroes

Jamie Murray with his Garda bravery medal received earlier this week. Piicture courtesy of Helena Murray

The mother of a nine-year-old boy who in January of this year was given a week to live says they have cherished the difficult months of lockdown as their "miracle" child has defied all the odds to see Christmas.

Jamie Murray from Clondulane, Fermoy, Co Cork is profoundly disabled.

Born blind and deaf, he was diagnosed with alobar holoprosencephaly (HPE), a developmental condition categorised by a failure of the brain’s frontal lobe to separate into two distinct hemispheres.

He also suffers from scoliosis. He was not expected to live beyond birth.

This week, Jamie received a bravery medal courtesy of the Garda charity Little Blue Heroes.

They treated Jamie to a Garda parade complete with flashing patrol cars with sirens, HSE ambulances and units of Fermoy Fire Brigade.

In January, the palliative care team said Jamie, who is the youngest of three, had about a week to live.

His parents, Helena and Mark, prepared for the worst in relation to their terminally ill child. Helena says he has exceeded all of their expectations.

Helena admits it was gruelling to be without outside help for a period of two months during the first lockdown.

She greeted Jamie's nurses, Joanne and Jen, like long lost relatives when they were finally able to come back into the family home.

She concedes it has been a hugely difficult year but stresses that Jamie has shown extraordinary fortitude.

He was in hospital in January and we were told that his body was shutting down and to bring him home and to prepare for a funeral. I met the consultant in November and she said she couldn't believe it. That he was a miracle.

"We never imagined we would have Christmas with him. He is fantastic. He is very strong. It will be a quiet Christmas. Just ourselves at home but we will enjoy it.

"At the start of the lockdown we had nobody in the house for two months. We were delighted to have Joanne and Jen the nurses back in. They are incredible."

Helena and Mark are grateful to the Little Blue Heroes charity for making little Jamie so happy this Christmas.

"The guards came with lots of flashing lights and noise in the village. He absolutely loved it. It was great to see it after a shocking year.

The Emergency Services parade in Fermoy held in honour of Jamie. Pictures courtesy of Helena Murray

Naturally, we have had to be very careful with Covid but my children's schools have been very good. Everyone has been very helpful. We have fantastic family and neighbours.

"I was taking Jamie to school for a few days a week to get a bit of normality. They are so careful there. It is a safe environment for him. And he gets physio and sensory care.

It has been a very lonely year. But everyone is getting on with it the best they can. The Covid numbers are very scary."

Helena says it is a surreal time for the couple and their two other children Jack (15) and eleven-year-old Lucas.

"The only good thing about the lockdown is the amount of time we are spending together as a family. When Jamie is good we can bring him for a walk following the recommendations of our paediatric consultant.

But we have to bring monitors with us. Oxygen and suction too. Other days he needs pain relief and we can't go anywhere.

Helena is urging people to mind their mental health during lockdown and to help each other as much as possible.

She says Jamie is a "little warrior" who battles on in a room that resembles an ICU ward.

"It is nice to have this family time together. We are grateful for that."