iPad offers family new hope
Family outings in the Winther household are always well documented with photographs and videos.
Reviewing images of friends and family members helps Jordan Winther to communicate with his loved ones.
The 8-year-old has Angelman syndrome, a rare condition with symptoms including severe intellectual disability, developmental delay, profound speech impairment and sleeping and movement disorders.
Communication is one of the main barriers Jordan faces.
But with the help of technology he's now able to understand and communicate with those around him.
Last August Jordan was given an iPad for his birthday and dad Jono Winther says it's been great helping him connect through pictures and videos.
"We take photos and videos all the time as it helps Jordan to understand and identify who's who and what's what.
"We weren't aware of the potential technology could give us but he's really taken to it. He could stay and be very focused on his iPad for a while," he says.
The Te Atatu Peninsula family attended an Angelman syndrome conference in Australia last year and mum Sivao Winther says the highlight was learning new ways to communicate with her son.
"He's been diagnosed as severely disabled yet he can communicate through an iPad. We came away thinking, ‘wow our son can actually do more than the label he's been given'.
"We were left with hope and excitement that we could give him a better quality of life," she says.
The conference discussed a technique called pragmatic organisation dynamic display, or PODD, where conversation is made through pointing to symbols in communication books to increase vocabulary skills.
The Winthers hope to try the programme in the future.
There's no cure for Angelman Syndrome which occurs once in every 20,000 births.
Doctors struggled to first diagnose Jordan who was suffering about 50 seizures a day, wasn't sleeping well and struggled to move and sit up.
Jono Winther says the establishment of an Angelman syndrome awareness day on February 15 two years ago has improved knowledge and understanding.
Paediatric neurologist at Starship children's hospital Rakesh Patel says it's important to encourage non-verbal forms of communication including hand and facial gestures, computer programmes and photographic mediums.
"As technology gets more accessible and easy to use, there will be big changes to Angelman patients with verbal impairment.
"If you provide them with a good way of communicating, they'll develop better because they can express themselves," he says.
- Western Leader
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