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Fragile X initiative from Wairarapa

Anita Nicholls. PHOTO/PAM GRAHAM

PAM GRAHAM
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Anita Nicholls is a mum who worked out mechanisms to cope with two sons with Fragile X Syndrome and now has funding to educate others about it.

She has won a $10,000 National Scholarship from AMP, which she received at a glittering ceremony in Auckland on Thursday night. The money will help her to achieve her dream.

Both her now grown-up sons have the genetic disorder, which causes a combination of autism and intellectual disabilities.

She said one award recipient commented when receiving their award that it was a validation of their dream and that was how she felt about it.

She learned about the AMP scholarships when a friend posted about them on social media just as she was working on her project in conjunction with the NZ Fragile X Trust and doctors who work in the area.

“Families are quite hard hit by Fragile X Syndrome and often families have more than one child,” she said.

It is diagnosed with a blood test but is often not picked up early.

“Sometimes by the time it is picked up families have had more than one child, which is what happened to us.”

She and others want to give affected families the skills and knowledge to support their children and get through everyday life.

“We had this dream and then about a week later we saw the advert, and I said ‘right, better give this a try’.”

It will likely cost more than $10,000 but the funding will get the project started.

“I will work on it funded or unfunded,” she said.

Nicholls is from Upper Hutt and moved to Carterton last December.

“It is really going to be enough to make it happen,” she said.

Education programmes have been found to be very successful for families with autistic children and they had been running successfully in New Zealand.

“It is one of those things where autism is a more common condition, so everyone provided something for the more common condition and the less common condition has been forgotten about.

“This is an opportunity to do something about that.”

There will be family input into the programme.

“That means there will be families providing information to other families.”

It’s about putting the latest research with local knowledge and putting it into several modules that can be delivered to people digitally with support from tutors.

AMP managing director Blair Vernon said AMP has received more than 2700 Scholarship applications from noteworthy Kiwis all across New Zealand in 2018.

Since 1998, AMP Scholarships have helped New Zealanders “own their tomorrow” through a total annual funding pool of up to $200,000, which assists in developing successful pathways for applicants from all backgrounds.

Fragile X syndrome is the world’s leading cause of inherited mental impairment

It’s the leading identifiable cause of autism

About 6 per cent of autistic people turn out to have Fragile X

About 1000 New Zealanders are affected by Fragile X and 8000 New Zealanders are carriers

Fragile X characteristics:

Delayed milestones (walking, talking, toileting)

Delayed and repetitive speech

Attention deficit and hyperactivity

Difficulties with mathematics

Strong visual memory

Hand biting and hand flapping

Autistic behaviours

Anxiety

Depression

Difficulty adjusting to change

Poor eye contact

Sensory sensitivitiy

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