Family of Co Down boy with rare condition say new home means he’ll now be able to live like other six-year-olds

Six-year-old John Luke Faulkner was born with Angelman Syndrome (AS).

The genetic disorder occurs in one in 20,000 children, and primarily affects the nervous system, causing severe delayed development, intellectual disability, severe speech impairment and problems with movement and balance.

Mum Lisa said: “John Luke 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.”

John Luke 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.

But thanks to a newly renovated property provided by the housing association, Choice Housing, on the Crawforsburn Road, Bangor, John Luke wll now be able 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.

The little boy, 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, as well as fine and gross motor skills.

Lisa said: “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.

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

The extensive renovation and adaptions also included installing a downstairs wet room, wheelchair access and the provision of a hoist.

Lisa added: “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”.

Significant consultation was undertaken between Choice Housing and Fusion Heating to ensure the property met the needs of John Luke now and for his long-term future.

Working alongside John Luke’s’ occupational therapist Sara McCrea, the team developed plans that would be fit for purpose throughout John Luke’s childhood, accommodating a condition with wide-ranging symptoms.

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.

Michael McDonnell, group chief executive at Choice added: “When we acquired the VHE 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.”

Angelman Syndrome was first identified in 1965 by a British doctor, Harry Angelman, for whom it is now named.

Dr Angelman had noticed similarities between a small number of previously undiagnosed children under his care, seeming to indicate they had common issues.

After seeing a painting in a museum in Italy called ‘A Boy with a Puppet’, he was inspired to write a medical paper titled ‘Puppet Children’, due to the characteristic happy demeanour and stiff jerky movements of the children.

At first, little was known of the disorder and few other cases were identified.

During the 1980s advances in genetic medicine made it possible to diagnose increasing numbers of cases and also to start identifying the cause.

The name Angelman Syndrome was adopted in 1982.

Although those affected have a normal life expectancy, they will require support throughout their lives.

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, you can visit https://www.angelmanuk.org/

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