News Video | Policy | GPs | Hospitals | Medical | Mental Health | Welfare | Search

 


A Family’s Mission to Save the Angels

A Family’s Mission to Save the Angels


Te Atatu residents Johnno and Sivao Winther are on a mission to raise awareness about their little boy’s disorder, known as Angelman syndrome.

Since Jordan was born 7 years ago they have had to face challenges of heartache and uncertainty simply because little is known about the neuro-genetic disorder.

The Winther family plan to attend the Angelman Syndrome Foundation conference in the United States July next year. They want to enhance their knowledge about their the Angelman syndrome, not only to learn more on how they can provide him the best quality of life possible for Jordan, but also to build the capability and resource within the Angelman Network here in New Zealand.

Mr Winther says: “we have no health professionals who specialise in Angelman syndrome in Aotearoa so you can appreciate the frustrations and uncertainty of families who have just been diagnosed with this disorder. We certainly can.”
The disorder has no cure and occurs once in every 20,000 births. Symptoms include severe intellectual disability, developmental delay, profound speech impairment, sleeping and movement disorders.

"A lot of the time when we're taking Jordan in to the hospital or doctors we find ourselves doing the explaining. They see us as the experts,” he says.

Mr Winther says the lack of information means many "angels" such as his son are often misdiagnosed.

Jordan was originally identified as having Prader-Willi syndrome, a congenital disease that reduces muscle tone and ability. But his parents doubted that was the correct diagnosis because he wasn't showing the right symptoms.

"They put it down to cerebral palsy after that until we had tests sent away to Sydney which showed he had Angelman syndrome," Mr Winther says.

Five Auckland families belong to the Angelman Network and Mrs Winther, who is a trustee alongside her husband, believes there are more in the community.

"The group is a support network and helps when it comes to things like what kind of physio you go to and that kind of stuff."

“Seizures have a major affect on those who have Angelman syndrome. Jordan can have up to 50 seizures a day. We have had families within our network who have lost their angels through seizures.”

“Above all of the challenges, our son is extremely loving. Jordan’s brother Luke, 8, is very protective of his brother and they’re very caring towards each other.

The Winther family is excited about work being done in the United States by associate professor Edwin Weeber.

"Earlier this year he was able to cure Angelman in mice and now they've started the first clinical trials on humans. They will be sharing some of their findings at the conference. It will be an amazing experience being there to witness the amazing work being done to help our angels," Mrs Winther says.

If you want to learn more about how you can assist please contact Jonathan Winther 0212777412

Visit angelmannetwork.com for more information on the Angelman Network.

Ends~

© Scoop Media

 
 
 
 
 
Culture Headlines | Health Headlines | Education Headlines

 

John McBeth: Our World Cup All Blacks

Forty or fifty years ago nobody really had any idea of what the selectors had in mind. There were often several trials, which sometimes featured over 150 players, possibly an inter island match or a final trial, then we listened to the announcement of the team on radio. The players weren't flown into the capital for a parliamentary function... More>>

ALSO:

Game Review: Midsomer Murders Meets First Year Philosophy

Developed by The Chinese Room, Everybody's Gone to the Rapture sees the player exploring what appears to be a recently abandoned idyllic English village trying to figure out where everybody's gone. Spoiler: they've gone to the rapture. (On a serious note, this review contains plot spoilers.) More>>

Scoop Review Of Books: Clear Science

It was really after his move to Wellington, to Victoria University, that it became apparent that Sir Paul Cllaghan was much more than an eminent physicist... More>>

ALSO:

Francis Cook: Weekend SportzMania! All Blacks! Netball!

Sports were on all weekend. I normally don’t write about sports but with Richie McCaw tipped to be the next Prime Minister, and Colin Craig arguing sports are almost as important as politics, I thought “what better time to start!” More>>

ALSO:

Beervana: Aussie Pav Beer Declared Taste Of NZ

In a surprising upset, an Australian beer modelled on the pavlova, created by Brisbane brewery Newstead Brewing, the 250 Beers blog and Scratch Bar, has been announced the winner at the Beervana craft beer festival ‘Flag Brew’ competition, which challenged media and brewing teams to capture the distinctive taste of New Zealand. More>>

ALSO:

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news