‘Help us make our Jamie’s remaining days the best’
‘WE WANT TO SPEND AS MUCH TIME AS WE CAN WITH OUR LITTLE WARRIOR’
A DEVOTED mother who, along with her partner, cares for their profoundly handicapped son who is receiving palliative treatment at their Clondulane home, near Fermoy, has spoken movingly about their struggle to “give him the care he needs and get the help we need”.
Helena and Mark Murray receive just two nights assistance each week from the HSE to care for their son Jamie (8), with the couple forced to give up work to care for their son on the other nights.
This has placed a severe financial and emotional strain on the family, with a message posted on a Go Fund Page aimed at raising funds to help cover Jamie’s care privately, saying Helena and Mark were at “breaking point”.
‘Jamie deserves more care. We need your help and if you can financially help us please do. Every bit will help pay for nurses for Jamie. Please help him,’ read the poignant message.
“WE have learned to live one day at a time. We are not naive. He is not going to be around forever, so while he is we just want to make him comfortable at home, give him the care he needs and get the help we need.”
Those were the heartfelt words of Clondulane mum Helena Murray, who was speaking about her beloved eight-year old son Jamie and the struggle she and her husband Mark have undergone over the years to care for their profoundly disabled boy.
Back in 2011, Helena and Mark Murray were thrilled to find out that she was pregnant with their third child. However, after the 14week scan, doctors noticed a build up of fluid on the baby’s head that steadily increased as Helena’s pregnancy progressed.
Born in November, little Jamie weighted in at 8lbs. However, the fluid build up on his brain meant that his head was the size of that of a baby more than double that weight.
He was subsequently diagnosed with alobar holoprosencephaly (HPE), an extremely rare developmental condition categorised by a failure of the brain’s frontal lobe to separate into two distinct hemispheres.
The condition is so rare it is believed only 20 babies are born with it across the world each year, with many of them not surviving beyond six-months.
It left Jamie deaf, virtually blind, with severely restricted body movement and prone to regular life-threatening seizures. He has also suffered from pneumonia and collapsed lungs, with Helena estimating that Jamie has spent a year of his short life in hospital.
Speaking to PJ Coogan on his 96FM ‘Opinion Line’ show this week, Helena said that Jamie, who is now eight, also suffers from severe scoliosis, is in constant pain and is receiving palliative care from the team at Marymount Hospice who visit their home once a week.
Helena said her family has a HSE homecare package in place covering just two-nights a week, leaving she and Mark to manage Jamie for the other five nights.
This involves continually monitoring his fluctuating stats and suctioning as Jamie is unable to breath properly unaided, and repositioning Jamie in his bed.
However, such was Jamie’s condition it was not safe for them to continue this without the appropriate medical assistance.
Helena said medical experts have agreed the family needs more help so they applied for a nightly care plan with the HSE “but nothing came of it”.
She has now been told that they must reapply for the plan, which could take a ‘couple of months’ to be sanctioned.
“We do not know how long Jamie will be around for. He needs that care now, not in a couple of months. We just want to spend as much time as we can with our little warrior. The HSE and agencies just don’t seem to see it. There is so much red tape involved,” said Helena.
A Go Fund Me page, originally set up to help his family cope with the financial burden and make the day-to-day cost of Jamie’s care more manageable, has been reopened in a bid to help cover the cost of the extended care regime that Jamie now requires.
A message on the page said that Jamie was “getting weaker and weaker” and that his parents, who have had to give up work to care for their son putting them under severe financial pressure, were at “breaking point”.
“Jamie deserves more care. He has defied the odds with the last eight years. The HSE has failed him and we should not have to fight for help. We want to be his parents not his nurses and doctors and spend time with him as a family,” read the emotional message.
“We are exhausted, the nearest respite is in Dublin. We are at breaking point but we want to keep him at home. We can not afford to pay for nurses to give us the support Jamie needs. We need your help and if you can financially help us please do. Every bit will help pay for nurses for Jamie.
Please help him.”