An Ardclough child is one of two who will benefit from a charity race which will take place on April 29 and hopes to raise €25,000.
A group of four teams, made up of volunteers from Lucan company Nostra ICT will race from ‘Dawn to Dusk’ to reach the Talbot Hotel in Wexford Town last Wednesday on April 29.
Each team has the option to complete a 1,000km drive, 75km walk, 140km run or 140km cycle.
The children are Jack McNiffe (11) from Ardclough and Alex Donnelly (15 months) from Rathfarnham.
Jack McNiffe, has Down Syndrome and cardiac defects. After his birth, he remained in Crumlin Children’s Hospital for 3 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) and is the only known case to have both Down Syndrome and CINCA syndrome worldwide.
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, including being non-verbal, he is the happiest little boy.
He is learning to communicate with both sign language and speech.
In the future, he will require adaptations to his home such as ceiling hoists to assist in moving him, a wet room (bathroom with wheelchair access) and widening of access doorways.
This is the second ‘Dawn to Dusk’ event organised by Nostra ICT. In 2016 the company helped raise €20,823 for a child who suffers with Cerebral Palsy Spastic Diplegia and Ataxia Dysarthria.
Speaking about the charity initiative, Kevin O’Loughlin, CEO of Nostra said that the teams were “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. We wanted to do something to assist both families financially to provide for rehabilitation, home help, travel to and from hospital, equipment etc. There is a necessity to overcome this huge burden that these parents face daily while caring for their children.”
You can donate to support the ‘Dawn to Dusk’ race challenge by visiting www.nostra.ie/dawn-to-dusk
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