Cork parents fundraising for private care for terminally ill boy
A mother who receives just two nursing nights a week from the HSE for her dying eight old son is fundraising for private care so she can spend quality time with him without the pressures of carrying out physio, intubating or toileting.
Helena and Mark Murray from Fermoy, Co Cork have given their profoundly disabled youngster Jamie 24-hour care for all of his short life.
The couple estimate that Jamie has spent at least one full year in hospital. Jamie has experienced pneumonia and collapsed lungs in recent years. Both blind and deaf his life has been a round of hospital appointments and admissions.
Jamie was born on November 3, 2011. At birth, 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 survive birth but has soldiered on showing extraordinary resilience in the face of adversity. He is now at the palliative care stage.
His mother Helena told the Opinion Line on Cork's 96FM that they want to cuddle Jamie while they can.
"We just want to spend time with our little warrior without the stresses and worries associated with him. I am not naive. He is not going to be around forever. While he is we just want to make him comfortable at home and give him the care he deserves and give him the help that he needs.
The nurses we have are fantastic. We would be lost without them.
Helena told broadcaster PJ Coogan that they cannot keep up with the care regime for their beloved youngest son.
Such is their despair with the lack of HSE response that they are resorting to reopening a Go Fund Me page set up several years ago. They just want Jamie to be comfortable at home.
"He (Jamie) is on morphine. His bedroom is like an ICU room. He is such a strong boy and he isn't going anywhere at the moment but it is just to keep the level of care and comfort for him at home.
"We have a Home Care package but it isn't sufficient. He needs suctioning all the day. He needs repositioning in the bed. He needs changing and he vomits and you might have to change his bed. His stats go up and down so we have to monitor them."
They know that time left with Jamie is short.
“Me and my husband take turns (minding Jamie) every night. We have two other boys and unfortunately their life has been Mam and Dad in hospital with Jamie.
"Every time we go to hospital our ten year old says 'Is this it?'
He has given us great years but when the time comes for him to go we are not going to resucitate him. We don't want to put him through that.
Helena said that they have never been able to rely on the system.
She is also conscious of the needs of her sons Jack and Lucas who are ten and 14.
“I don't know when we were last out together as a family. It is not fair on them. They are great big brothers.”
Donations can be made to the Jamie Murray nursing appeal fund here.
