The family of a young boy diagnosed with a rare, incurable condition called Metachromatic Leukodystrophy has launched an appeal for assistance with his care.

A fundraiser for toddler Aidan Kenny has raised nearly €50,000 of its €150,000 goal to allow his parents Seán and Deirdre give him the 24/7 care he needs.

On Newstalk Breakfast this morning, Seán Kenny said Metachromatic Leukodystrophy (MLD) is a degenerative disorder that attacks the nervous system and white matter in the brain.

“It slowly takes over the body and, bit by bit, shuts down the various functions, starting off with the gross-motor, legs and arms and moving on to fine-motor then – your swallow, talk and finger movements as well – and eventually the inevitable happens.

“It is a slow process but it is life-limiting.”

Roscommon toddler Aidan Kenny who has been diagnosed with Metachromatic Leukodystrophy. Image: Kenny Family

He said Aidan will be three in July and has found the whole experience very frightening in recent months.

“Aidan needs us as parents,” he said. “We need to be here for him.”

“Every single day, absolutely everything that he needs to stay with us, we need to do it for him. We need to do all the feeding; we need to do all the medication.

“On top of that Aidan would be very frightened about what has happened over the last few months. This time last year, Aidan had no sign of anything wrong. He was absolutely thriving, flying it, there was no sign of anything wrong.

“So, in a short space of time this has come over him and he was aware as it was happening that something was going wrong.

“So, me and Deirdre have been his rock and he feels safest with us around. He has been through a lot in the last few months with hospitals and appointments and different things and he finds it hard to trust others as well considering everything he has been through.

“His time is limited and his favourite thing in the whole world is me and Deirdre so we want to be with him as much as we can. We have to be.”

Aidan Kenny with his da Seán on a tractor. Image: GoFundMe

Seán said Aidan is now fed through a machine as he has no control over his swallowing and needs 24/7 care.

He paid tribute to the Jack and Jill foundation which has supported the family since Aidan’s diagnosis.

“It is a wonderful organisation,” he said. “I never understood what they did until now.

“We have two nurses there one for daytime hours and one for nighttime hours and only for them … they are absolutely unbelievable.

“They come in and they are part of the family and Aidan trusts them as much as possible but there is the added benefit of, if anything happens, they are able to care for Aidan immediately, they know exactly what to do and it gives me and Deirdre a respite to do the things that need to be done to keep the house functioning.”

Roscommon toddler Aidan Kenny who has been diagnosed with Metachromatic Leukodystrophy. Image: Kenny Family

He said he and his wife are “in overdrive” with everything that has happened in recent months and have had very little time to process it all.

“Our priority like any parent is the kids and we are trucking on for them,” he said.

“We are conscious that it is having a toll on us emotionally and physically so we are conscious of that but there isn’t a lot we can do about it.”

You can donate to the fundraiser at the ‘All for Aidan’ GoFundMe page.