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All for Aidan Father of boy with rare disorder says son is becoming 'frightened' as he grows aware of condition

'Aidan needs us as parents...We need to be here for him'

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Aidan Kenny

Aidan Kenny

Aidan Kenny

The father of a Roscommon toddler who was diagnosed with a rare, incurable condition has told how the little boy has become “very frightened” about what has happened over the last few months. 

Little Aidan Kenny has Metachromatic Leukodystrophy (MLD) that dad Sean explained is a degenerative disorder that attacks the nervous system and white matter in the brain.

Speaking on Newstalk Breakfast this morning, Seán described how it slowly takes over the body.

“Bit by bit, (it) 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,” Sean said.

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

Sean added that with Aidan turning three in July “he was aware as it was happening that something was going wrong”.

“Aidan needs us as parents,” Sean added. “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.”

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

He said he and his wife are “in overdrive” with everything that has happened in recent months but the 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.”

He described the Jack and Jill foundation which has supported the family since Aidan’s diagnosis as a “wonderful organisation”.

“I never understood what they did until now,” he added. “We have two nurses there one for daytime hours and one for night-time 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.”

A GoFundMe page has been set up called ‘All for Aidan’ where people can donate to help out.

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