Tuesday 18 June 2019

Little Jamie to benefit from Conna vintage run

'Jamie will never be able to live the normal life that most people enjoy'

Jamie Roche Murray from Clondulane near Fermoy suffers from an extremely rare developmental condition
Jamie Roche Murray from Clondulane near Fermoy suffers from an extremely rare developmental condition

Bill Browne

The annual Connabride Vintage Rally will take place in the north Cork village of Conna this Sunday at 2pm, with proceeds from this year's event going to the Jamie Roche Murray Fund. 

In 2011 Helena Roche and her partner, Mark Murray, were thrilled to find out that she was pregnant with their third child. 

However, after the 14-week scan, doctor's 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, an extremely rare developmental condition categorised by a failure of the brain's frontal love to separate into two distinct hemispheres. 

The condition is so rare that is believed only 20 babies are born with in 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. Although he has defied the odds Jamie finds breathing difficult, has to be fed through a tube and, in the words of family friend Kirsty Tobin, trips to the hospital occur with "alarming regularity." 

"He will never be able to lead the normal life that most people are lucky enough to enjoy," said Kirsty. 

The Jamie Roche Murray Find was set up in 2013 to help his family cope with the financial burden and make the day-to-day cost of Jamie's care more manageable. 

"As Jamie approaches his seventh birthday, he continues to require specialist equipment and care that are extremely expensive. Adaptations to the family home he lives in with his parents and brothers Jack and Lucas, transport to and from hospital and numerous medical expenses have had an untold cost," said Kirsty. 

Monies raised through Sunday's rally will go the fund's account held at the Synergy Credit Union in Fermoy and will be used to cover the cost of Jamie's long term care.

 Donations to the fund can be made to the account and also through the dedicated Go Fund Me page. "The significant financial pressures on the family resulting from the unpredictable nature of Jamie's healthcare needs has resulted in the family suffering severe financial stresses," said Kirsty. 

"All monies raised through the fund will go towards making the cost of Jamie's care more manageable," she added. 

Now in its 25th year the Connabride Vintage Rally will treat visitors to the village to exhibitions of old-time threshing, a vintage vehicle display, a range of exhibits, music and plenty of entertainment for the whole family..