On Sunday November 26, a very special Christmas Party and Family Fun Day will take place at the Clayton Hotel Galway, to raise funds and support the ongoing medical care of one truly amazing little hero, Jonah Murphy. Speaking at the launch of “Jingle Bells for Jonah” this week, event organiser and family friend Leona Donlon told the incredible story of little Jonah’s journey so far.
“Jonah is a very special little boy, he was diagnosed during his 20-week scan with a very rare heart condition which meant that only half of his heart developed. There is no cure or fix for this condition, his distraught parents were told that he would need three surgeries just to keep him functioning to adult heart function and if successful he would then require a transplant as a teenager” she said.
“This little warrior had his first surgery at just four days old. After Jonah was discharged and at home recovering he suffered a cardiac arrest, he was just seven weeks old, he is in fact the only baby with his condition to survive an out of hospital arrest. The lack of oxygen during arrest however resulted in brain stem injury, leaving Jonah with significant challenges.
“His heartbroken parents were to receive a further blow when the neuro team on Crumlin advised that on ethical grounds, Jonah would not be eligible for further surgery, however without this life saving treatment Jonah’s time would be very limited.
“He was transferred to palliative care and late January 2016 he along with his devastated parents made a very long tough journey back, The Bumbleance brought him on his Angel trip home, to make memories and spend time together as a family,” said Leona,
She went on to detail how how this little superstar had a very different plan.
“Slowly Jonah started to defy the odds, having lost his swallow reflex he actually taught himself how to swallow tiny little pieces of puréed fruit, he began to interact, he smiled, he laughed, he responded to touch and stimuli and in March 2016 he sat up unaided, defying every odd that was stacked against him.
“Armed with these huge developments, Jonah’s parents returned to the neuro team to show them what their little hero was capable of. Amazed at his progress they conceded that Jonah was in fact a candidate for surgery, and in April 2016 Jonah got his life saving emergency surgery just in time as his previous temporary shunt was now too small for his growing body.
“Jonah still has many challenges but he continues to fight on like a total champ; there are very difficult days for him and his devoted parents, but also there are the wonderful God-sent days where he smiles, stacks his building blocks, squeals with delight watching his favourite shows on Baby TV and absolutely now against all odds, he is climbing stairs like a total pro. He is a little super hero,” she concluded.
From 2-6pm on Sunday Nov 26, the Clayton Hotel will play host to this exciting festive family day out for Jonah. As well as a Santa Visit on the day, there will be a fun kids disco with facepainting, nail art, Christmas arts and crafts, festive fun and games and a monster raffle!
Tickets cost €10 per child or €30 for a family of four children, and are available from Sweeney’s Pharmacy Claregalway, Wolf & West Menswear Oranmore, or by calling Leona on 087 9034562.
Limited tickets will also be available at the door.