Fragile X Syndrome is a huge part of the lives of Michael Hori and Janine Ryder.
Five of their seven children have the debilitating syndrome which can produce intellectual disabilities, physical characteristics such as elongated facial features, atypical social behaviours including social anxiety and autism in some.
The family's challenges are ongoing but this week the Auckland parents were among 70 caregivers of ill and disabled children treated to a lunch to acknowledge what they do.
At the Variety - The Children's Charity's "Heroes for Kids" luncheon at Villa Maria Estate, each table of 10 had a Variety celebrity and guests enjoyed three courses and entertainment.
"It was absolutely amazing," said Ms Ryder. " It was all about us and we actually had five minutes to ourselves. We met some great people and feel rejuvenated. And Michael won the big spot prize - a cellphone."
As a new mum Ms Ryder struggled to find out what was wrong with her baby.
"When I first took my child to the doctor the syndrome was not recognised. I was aware there were developmental issues but I was told I was a new mum and not to focus too much on the child."
She went to five different doctors before Fragile X syndrome, a genetic disorder, was finally diagnosed.
Mr Hori and Ms Ryder survived for many years on their own with no assistance but now their children have been diagnosed they get help from Work and Income as neither of them can work. Looking after their children requires them to be home seven days a week. Mr Hori described one of their children as capable of only three-word sentences.
Four children attend Oaklynn Special School which gives some relief during the day. Staff member Colleen Smith nominated Ms Ryder and Mr Hori for the Heroes for Kids lunch.
In the nomination she said: "The journey this family has undergone has been very difficult, especially until the children's disability was diagnosed as genetic. Despite the adversity and stigma attached to having more than one child with behavioural, social and communication difficulties, they've been wonderful parents, very supportive of the children's education and medical needs."
Variety president Joe Moodabe acknowledged there were many families with challenging situations they had to deal with 24/7. "Variety helps kids and fills the gaps. Each year we help over 10,000 children by meeting their needs whether health, sporting or educational, hoping to provide a brighter future for them."
Fragile X Syndrome
* The most common inherited cause of intellectual disabilities, caused by one gene mutation.
* Most common cause of autism.
* Learning problems, autism, anxiety and some physical features can be subtle or quite pronounced.
* Affects one in 4000 males and one in 6000 to 8000 females.
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