Day-long race aims to raise funds for sick kids

THE retired Dublin GAA footballer, Tomas (Mossy) Quinn, has leant his support to a charity event called ‘Dawn to Dusk’ that is aiming  to raise funds for two sick children. 

Nostra ICT in Lucan is hosting the event on April 28 for Alex Donnelly, from Rathfarnham, and Jack McNiffe, from Ardclough in Straffan.

A group of four teams, made up of volunteers from ICT will race to complete either a 1,000km drive, a 75km walk, a 140km run or a 140km cycle, to be the first to reach the Talbot Hotel in Wexford Town on April 29.

This is the second ‘Dawn to Dusk’ organised by Nostra after a similar event last year helped raise €20,823 for Zaki Diellaba who suffers with Cerebral Palsy Spastic Diplegia and Ataxia Dysarthria.

Alex Donnelly suffered HIE (Hypoxic Ischemic Encephalopathy) just before birth.

This is a form of brain damage caused when a baby’s brain is starved of oxygen.

Eight days after Alex’s birth, when tests showed how extensive her brain damage was, doctors informed Alex’s parents that there was nothing more they could do for her.

At this point, it was agreed to switch off the ventilator but thankfully Alex continued to breathe on her own and remained in ICU for a further four weeks before being allowed home.

As a result of the brain damage, Alex is visually impaired and has epilepsy and cerebral palsy and is currently fed and medicated through a feeding tube.

Her parents are eager to give Alex access to the intensive rehabilitation required so she can reach her full potential.

Jack McNiffe has Down syndrome and cardiac defects.

After his birth, he remained in Crumlin Children’s Hospital for three years, only to return home for a few days at a time.

It took doctors almost two years to diagnose that Jack also suffers with CINCA syndrome (Chronic Infantile Neurological Cutaneous Articular) syndrome.

He is the only known case to have both Down syndrome and CINCA syndrome in the world.

These disorders mean that Jack is tube fed 24-hours a day, is incontinent and cannot walk which requires him to use a wheelchair.

He has a big sister, Molly (13) and despite all his challenges he is the happiest little boy.

Although he is non-verbal, he tries hard to communicate with both sign language and speech.

In the future, Jack will require adaptations to his home such as ceiling hoists to assist in moving him, a wet room and widening of access doorways.

While he continues to receive care and support from charitable organisations there is always a shortfall.

Kevin O’Loughlin, the CEO of Nostra said: “We are really looking forward to ‘Dawn to Dusk’ and hope we can raise much needed funds for Jack and Alex.

“We are calling on the public to give whatever they can to support them.

“Having spoken with Jack and Alex’s parents, we wanted to do something to assist both families financially to provide for rehabilitation, home help, and travel to and from hospital.

“There is a necessity to overcome this huge burden that these parents face daily while caring for their children.”

Nostra is hoping to raise €25,000 through the ‘Dawn to Dusk’ event this year. All donations go directly to the children.

 You can donate to support the ‘Dawn to Dusk’ race challenge by visiting www.nostra.ie/dawn-to-dusk