Family of Blenheim girl with rare genetic condition make 'happy memories' for others
Eleven-year-old Zoe Tate is a bundle of barely-suppressed bounce and giggles.
Zoe was born with rare genetic disorder Wolf-Hirschhorn Syndrome (WHS), which affects about one in 50,000 people.
Doctors said she would not see her first birthday.
She weighs just 19 kilograms, but loves horse riding, ball games and running around the playground with her friends.
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Features of WHS include a characteristic facial appearance, delayed growth and development, intellectual disability, low muscle tone and seizures.
Her mother Rosa says she experienced a normal pregnancy and scans showed a "small but healthy" baby. Zoe was delivered by Caesarean section at 36 weeks at Wairau Hospital, in Blenheim.
"There was never an indication that something wasn't right," Rosa says.
Hospital staff later discovered the soft tissue at the back of Zoe's throat was missing and blood tests were done to rule out other conditions associated with cleft palate.
"I remember being devastated and look back now and laugh at the irony. If only that was all we had to worry about. Zoe was 5-weeks-old before we got the results back and we were told she'd die within the year.
"She's certainly shown them."
Zoe's mother and father are organising a conference, the first of its kind in New Zealand, for other people in Australasia with the unusual condition and their families.
They hope the support of the Marlborough community will make the event a memorable occasion.
Rosa said the biennial conference and AGM, usually held in Australia, was invaluable for those living and dealing with the condition. The family, including Zoe's sister Tess, 9, had attended two conferences.
"This will be the first New Zealand conference and my husband and I aim to help these families have the best weekend that Marlborough can give them. We hope people across Marlborough will join in and show off our region to the world."
They wanted families who were affected by the condition to make happy memories, she says.
"We both love seeing our daughter have fun and living life to the full but this isn't always possible. We intend to make sure that this weekend will do just that."
There is no support group for families in New Zealand, Rosa says.
"While the conferences are really good for Zoe, it's also really important for Tess too, so she knows she's not the only girl with a disabled sister."
Zoe, who has the mental age of a 3 or 4-year-old, is a pupil at Witherlea School where she attends classes with the support of a teacher aide. She wears a hi-visibility vest while running around the playground so she can be seen easily.
Tess and Zoe share a special bond, but like most siblings bicker occasionally, Rosa says.
"Zoe is pretty awesome, she's really easy going, quite opinionated and feisty but she doesn't understand when she does something wrong. Tess is her best mate.
"Tess is amazing with Zoe, quite the second mother."
Rosa and husband Bob are fundraising for the four-day conference which is scheduled to take place from October 13 to 17.
They want to take visitors to the Marlborough Sounds for the day, horse riding and to the movies but volunteers are needed to lend a hand.
"We want to showcase Marlborough and show people how wonderful it is here. If people can help at all, we'd be absolutely delighted," Rosa says.
For further information email firstname.lastname@example.org or visit givealittle.co.nz.
- The Marlborough Express