Aiva Barry was left with severe learning difficulties as a result of the damage to her brain from having seizures during her sleep, which was a symptom of her rare chromosome disorder. Aiva had stopped breathing for 3–4 minutes when she was 2½ years old. The now 12-year-old was diagnosed with epilepsy, a chromosome disorder and ASD.
Her family were able to apply for support to build a new ground-floor bedroom and bathroom for Aiva – and as soon as the extension is completed, volunteers from Band of Builders will undertake a landscaping project to create a garden that Aiva can play safely in.
Aiva Barry 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.
Work is nearing completion on the extension, and Aiva’s dad – who is a landscaper – will work alongside Band of Builders volunteers to remodel the 70 sq. m garden and install new fencing to create a safe and secure place for Aiva and the rest of the family.
12th October - 16th October 2023
The location of Aiva’s project is Craigavon, Northern Ireland.
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