Tuesday 19 February 2019

'He's the happiest little boy you could meet' - parents of young boy (4) with cerebral palsy launch fundraiser to make his 'wish to walk' a reality

Noah O'Sullivan (4) from Co Waterford with his parents Debbie and David and little brother Jack.
Noah O'Sullivan (4) from Co Waterford with his parents Debbie and David and little brother Jack.
Rachel Farrell

Rachel Farrell

THE parents of a four-year-old boy from Co Waterford said they were "over the moon" when their son was accepted as a candidate for life-saving surgery in the US.

Noah O'Sullivan (4) was born at just 29 weeks old and diagnosed with a form of cerebral palsy at 18 months old.

The young boy was transferred to Temple Street Children’s Hospital having suffered two brain bleeds, hydrocephalus and meningitis, and received a diagnosis of spastic diplegia cerebral palsy as a result of the early on conditions.

His parents have launched a fundraiser to support Noah's "wish to walk" and to help him get to the USA for surgery, after discovering he was the "perfect candidate" for selective dorsal rhizotomy (SDR) surgery, which could give him the chance to learn to walk independently.

Noah O'Sullivan (4) from Co Waterford.
Noah O'Sullivan (4) from Co Waterford.

Noah currently cannot sit freely or comfortably without a chair, and has poor balance.

The young boy has been attending physiotherapy since he was 4 weeks old, but need surgery to eliminate the spasticity which dominates his body.

"We initially heard about SDR surgery from another parent when Noah was just 2 years old. When we looked further into it, we knew it would be a game changer for Noah," mum Debbie told Independent.ie.

"We researched it and met with other Irish families who had taken their children to the USA and the results just couldn’t be ignored. We met with the surgeon when he was visiting Ireland and I was overwhelmed that the dream of seeing Noah walking someday could become a reality."

Noah O'Sullivan (4) was born at just 29 weeks.
Noah O'Sullivan (4) was born at just 29 weeks.

After sending off the paperwork, Noah was accepted for the surgery last year, which is expected to cost almost €55,000.

"We knew Noah would be a perfect candidate but when we actually saw it in writing, the predicted outcome that Noah would be expected to walk in all terrain indoors and outdoors after surgery, we were just over the moon," Debbie said.

"Noah is the smiliest, happiest little boy you could meet. He is always up for any bit of fun. He loves trains and could sit for hours playing with them. He loves to be active, running in his walker with his little brother Jack.

"We have so many great people taking on different events for Noah, and we could not be more grateful for the support we have received so far."

Noah O'Sullivan (4) with his brother Jack from Co Waterford.
Noah O'Sullivan (4) with his brother Jack from Co Waterford.

His family are aiming to raise €100,000 to cover the cost of the surgery, transport to St Louis and for 3 years intensive post-op rehabilitative physio therapy- which can cost up to €20,000 for the first year, and €10,000 for the following years after.

A 'Motivational Night for Noah' event will take place on February 16, as well as a sponsored climb of Carauntoohil on April 13.

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