A Bangor mum has opened up on her six-year-old son's rare condition that occurs in 1 in 20,000 children.
John Luke suffers from a genetic disorder called Angelman Syndrome (AS) which primarily affects the nervous system.
Symptoms include severe delayed development, intellectual disability, severe speech impairment and problems with movement and balance.
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His family have recently moved into their new home, but mum Lisa has told how life was before this - living in a three-storey home, having to sleep in the living room with John Luke and bathing him with a flannel.
The child also suffers from a sleep disorder which can manifest by only sleeping for 20–30-minute naps on some nights or going without sleep for a whole night. He is not mobile and unable to talk.
Lisa said: “My son John Luke, who is now six, was diagnosed in October 2018 after a very long battle over an 18-month period. The condition is often put down to delayed development and/or autism and diagnosis is not fully achieved unless a genetic blood test is done to detect abnormality in Chromosome 15.
"We knew something was wrong but we didn't know what. He wasn't reaching all of his milestones. It wasn't until he actually, aged two and a half, had seizures and was rushed to the hospital."
The mum-of-four told Be : "It had got to the point John Luke was so heavy that I couldn't actually lift him up the stairs and we couldn't use the special needs bed or anything, we were sleeping downstairs with him.
"I couldn't get him up to the bathroom either so I was having to bathe him with a dish of water and a flannel.
"The housing association did look at adapting the house we were in before, but unfortunately it just wasn't feasible nor was a lift an option due to John Luke's epilepsy.
"Had we not have been allocated this property, we would have been in just dire straits, because he can't stand independently or walk, getting him up the stairs was just impossible.
"We were really out of options."
Lisa and her family are Choice Housing tenants. Following consultation, a programme of extensive renovation and adaptions were designed and delivered by Choice's Building Surveying team ensuring the property met John Luke’s specialised needs.
This included installing a downstairs wet room, wheelchair access and the provision of a hoist and low surface temperature radiators.
The Faulkner family moved into their new home in December and said they were delighted at the news.
The newly renovated bungalow allows the six-year-old to gain full use of his hospital bed, tailored for his needs which he previously had not been able to use due to the lack of space in their former property.
John Luke, who up until this point has never had his own bedroom, will now also have a soft play sensory area aimed at helping with a range of visual and auditory processing.
Lisa told Be: "When this came along, we just couldn't believe it.
"Having the specially adapted bungalow where the wet room and the hoists are in from the downstairs bedroom is just absolutely fabulous.
"We are very, very fortunate and we were very, very lucky that this property came along.
"It was such a relief as I was at my wits end, I really was.
"Everyday life was extremely difficult, even transferring him and out of the wheelchair.
"That was the point he was at. We were going, 'As he gets bigger and heavier, how are we going to cope?'
"It was a horrible thing to try and have to predict his future needs.
"We are so grateful. He's got his own room now. It's just made such a difference."
Lisa added: "Another dangerous thing we had in the old house was radiators, because of his neurological condition he doesn't process pain the way another child can.
"If he put his hand on a radiator, he wouldn't realise it was hot, and before he would actually process that, he would hurt himself. The Housing Executive and the housing contractor were absolutely fabulous with putting things like low surface radiators in.
"It's just little things like that have made such a difference so far as John Luke's safety is concerned.
"Moving into our new home hasn’t just ensured that John Luke can live a normal life like any other six-year-old, but it secures our long-term future as a family. Before this, we were never sure if at some stage fulltime residential care would have to be an option if we weren’t able to accommodate his needs at home”.
The property which was acquired by Choice as part of their transfer agreement with Victoria Housing Estates (VHE) was included in a £25m renovation and refurbishment programme to bring the properties up to a high standard of living. The four-bed bungalow was identified by the Choice Assets team as a possible fit to meet the specialised needs of John Luke.
Since John Luke’s diagnosis, Lisa has become a health advocate, raising awareness of Angelman Syndrome (AS), working with health professionals to highlight the day to day needs and challenges of this rare condition on patients and their families. Lisa also speaks at and participates in parent forums aimed at gaining as much information about the condition as possible.
For more information on Angelman Syndrome, CLICK HERE.
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