Brave week old Cork boy defies the odds of enjoying Christmas as a family

The mother of a nine-year-old boy who was given a week to live in January this year says they have appreciated the difficult months of confinement as her “miracle” son has defied all odds of seeing Christmas.

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

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

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

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

Jamie was invited to a Garda parade complete with flashing patrol cars with sirens, HSE ambulances and units from the Fermoy Fire Brigade.

In January, the hospice team said that 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 son. Helena says it has exceeded all her expectations.

Helena admits that it was exhausting being without outside help for a period of two months during the first confinement.

He greeted Jamie’s nurses, Joanne and Jen, as long lost relatives when they were finally able to return to the family home.

He admits that it has been a tremendously difficult year, but stresses that Jamie has shown extraordinary strength.

He was in the hospital in January and we were told that his body was closing up and to take him home and get ready for a funeral. I met the consultant in November and she told me she couldn’t believe it. That it was a miracle.

“We never imagined that we would spend Christmas with him. He is fantastic. He is very strong. It will be a quiet Christmas. Just us at home, but we will enjoy it.”

“At the beginning of the lockdown we had no one in the house for two months. We were delighted to have Joanne and Jen the nurses back. They are incredible.”

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

“The guards arrived with a lot of flashing lights and noise in the village. He loved it. It was great to see him after a horrible year.

Naturally, we have had to be very careful with Covid but my children’s schools have been very good. Everyone has been a great help. We have a fantastic family and neighbors.

“I would take Jamie to school a few days a week to regain some normalcy. They are very careful there. It is a safe environment for him. And he receives physiological and sensory care.

It has been a very lonely year. But everyone is doing the best they can. The Covid numbers are very scary. “

Helena says it’s a surreal moment for the couple and their other two sons, Jack (15) and Lucas, eleven years old.

“The only good thing about the confinement is the amount of time we spend together as a family. When Jamie is well, we can take him for a walk following the advice of our pediatric consultant.

But we have to bring monitors with us. Oxygen and suction too. Other days you need pain relief and we can’t go anywhere.

Helena urges people to be concerned about their mental health during the confinement and to help each other as much as possible.

She says that Jamie is a “little warrior” who fights in a room that looks like an intensive care room.

“It’s good to have this family time together. We are grateful for that.”