Northern Ireland

Mother of Co Down boy who suffers from rare condition describes relief at moving into house where he 'can live a normal life'

From left, Chris Graham (Choice Senior Building Surveyor), Lisa, John and John Luke Faulkner and Michael McDonnell (Choice Group Chief Executive)
From left, Chris Graham (Choice Senior Building Surveyor), Lisa, John and John Luke Faulkner and Michael McDonnell (Choice Group Chief Executive) From left, Chris Graham (Choice Senior Building Surveyor), Lisa, John and John Luke Faulkner and Michael McDonnell (Choice Group Chief Executive)

THE mother of Co Down boy who suffers from a rare condition affecting just one in 20,000 children has spoke of her relief at moving into a house that ensures her son "can live a normal life".

Lisa Faulkner, whose son John Luke (6) has Angelman Syndrome (AS), said their "long-term future as a family" has also been secured after a house was specially adapted for his needs.

"Before this, we were never sure if at some stage full-time residential care would have to be an option if we weren’t able to accommodate his needs at home," she said.

The family have recently moved into their new home in Crawfordsburn Road, Bangor, which has been fully modified by Choice Housing to meet John Luke's needs.

The young boy suffered from AS, a genetic disorder that primarily affects the nervous system. Symptoms include severe delayed development, intellectual disability, severe speech impairment and problems with movement and balance.

He also suffers from a sleep disorder which can manifest by only sleeping for 20 to 30 minute naps on some nights or going without sleep for a whole night. He is not mobile and unable to talk.

"My son John Luke, who is now six, was diagnosed in October 2018 after a very long battle over an 18-month period," said Ms Faulkner.

"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."

In a bid to help the family, Choice Housing carried out extensive renovation and adaptions to the four-bed bungalow, including installing a downstairs wet room, wheelchair access and the provision of a hoist and low surface temperature radiators.

The newly renovated property will allow John Luke 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, now also has a soft play sensory area aimed at helping with a range of visual and auditory processing, as well as fine and gross motor skills.

"The Choice team along with their partner Fusion Heating listened to our needs and understood the importance that every detail of our new home would have on John Luke’s life," said Ms Falkner.

"Dimmer switches, low pressure shower and low surface temperature radiators were all put in place to protect John Luke and keep him safe.

"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 full-time residential care would have to be an option if we weren’t able to accommodate his needs at home."

Michael McDonnell, group chief executive at Choice added: "When we acquired the Victoria Housing Estates properties back in 2020, we were aware that there was a requirement for significant refurbishment to the properties.

"In the process of assessing these properties, the four-bedroom bungalow was clearly a viable option for Lisa and her family, and the refit ensured it met the needs of a family who could now look at their new home as their long-term home."