A 12-year-old girl who was left with severe learning difficulties will be able to play safely in her back garden for the first time after volunteers from Band of Builders (BoB) completed a project at her home in Craigavon in Northern Ireland.

Aiva Barry and her family have thanked volunteers for landscaping their back garden and erecting fencing around it – as the finishing touch to a bigger project where the family obtained funding to build a new ground-floor bedroom and bathroom for her.

Speaking at the handover of the project, Aiva, along with mum Catrina, dad Ciaran (who is a landscaper) and sisters Catlin and Orlaith, said: “It looks amazing – and we can’t thank everyone involved enough for coming together as a team to create an area where Aiva can play safely. She’s looking forward to having a new bunny rabbit and a hot tub in her new garden.”

Aiva was just 2½ years old when she suddenly stopped breathing. This lasted 3–4 minutes before her parents were able to resuscitate her – and she was rushed to hospital. It was initially thought that she had a heart defect and she underwent a range of paediatric tests, as her heart rate kept climbing and falling. At that stage, epilepsy was ruled out because Aiva wasn’t fitting or foaming at the mouth, so they didn’t think it was epilepsy at that point.

Over the next 18 months, Aiva saw a number of doctors and underwent a battery of tests, where it was discovered that she did have a rare form of epilepsy called electrical status epilepticus during sleep (ESES), which was causing the raised heart rate when she was sleeping, as her brain was having seizures. Aiva required an immediate aggressive treatment of steroids to try and get these under control, along with epileptic medication.

Aiva was diagnosed as having 15q11.2 microdeletion – which is a rare chromosome abnormality in which a tiny piece of genetic material is missing. The most common features include developmental, motor and language delays; behaviour and emotional problems; attention deficit disorders; and ASD.

Aiva goes to a local school that specialises in supporting children with special educational needs. At times, Aiva can write her own name, and then other days she is unable to due to her not being able to retain information. Aiva is a loving, caring child and always smiling. Aiva’s diagnoses are life-long, and she will continue to have these difficulties and need support and care throughout.

Band of Builders stepped in

It was one of the kind-hearted builders who built the extension that signposted the Barry family to Band of Builders, as the funding for the home renovation didn’t cover the outside area, which needed to be safe and secure for Aiva.

JP Corry, one of Northern Ireland’s leading builders’ merchants, was the headline sponsor for the project, which was also supported by the charity’s National Landscaping Partner, Talasey – which is one of the UK’s leading independent suppliers of landscaping solutions. It was the 34th project for BoB, and the week-long project (which was hampered by the weather) involved creating a seating area, laying paving and installing outdoor lighting in the 70 sq. m area.

Project Manager Marcus McGee thanked the five volunteers, including Aiva’s dad, and said: “Band of Builders has done what it does best in helping our own in the construction industry and completing projects that will make a huge difference to the lives of tradespeople and their families,” he said.

“Having a safe outdoor space means the world to Aiva – and the smile on her face has made it all worthwhile.”