LAST Christmas, two year old Aiden Kenny was running around playing with the toys Santa brought.
Right now he is unable to speak, walk or move and suffers terrible pain.
The plight of the toddler with a rare disease has prompted staff and management at a Limerick company to raise money for the care he needs.
The illness Aiden is suffering from, Metachromatic Leukodystrophy (MLD) is quite rare and attacks the brain and the nervous system.
VIOTAS, the smart grid technology company based in Plassey, has set up a fundraising drive on behalf of the little Roscommon lad who has been diagnosed with the incurable illness.
His dad, Sean, told the Limerick Post that what Aiden has suffered in his short life is “unimaginable.
“He needs 24 hour care. It’s been a roller coaster and the change since Christmas has been very hard. But he’s such a special little boy and he can still smile.
“We have great support from organisations like Jack and Jill and from the HSE but a child that age, just wants his mammy and daddy.”
Sean, a civil engineer and mam Deirdre, who is a schoolteacher, both know that as Aiden’s condition worsens, they will need to cut back on work to be with him and give him the best quality of life possible.
To add to the tragedy, there is no routine testing of newborns for the condition.
“If he had been diagnosed at the start, there is treatment that would have saved his life,” Sean explained.
“We’ve been told that the best we can hope for is that he gets to ten years of age and as that comes closer, we want to spend time with him. The fundraising will also help with things like equipment that he needs at home.
“For even something as simple as bringing his baby brother Darren for a check up, means we have to employ a qualified nurse. We can’t just get a babysitter and that works out at €200 a day. We want what time we have with him to be the best it can be,” said Sean.
VIOTAS got involved because the family are close friends of the company’s managing director Paddy Finn.
Said marketing manager, Jonathan Travers, “We’re trying to raise the life-changing amount of €150,000 to help his family give him the support he needs.
“We have started a company-wide step challenge to reach 250,000 steps per person in the company during the month of May. So far we have raised more than €28,000 but we still have a long way to go.”
The link to Aidan’s fundraising page is www.gofundme.com/f/all-for-aidan