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Dad of boy with rare disability sheds tears as he discusses donation to Taranaki learning centre

“It gives value to what we’re doing, it gives value to Zac.”

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Conductive Education Taranaki coordinator Craig Neilsen and his son Zak joined Breakfast to announce a donation to the education programme for tamariki with disabilities. Source: Breakfast

That’s how Craig Neilsen, a Conductive Education Taranaki coordinator and a father of a boy with a rare intellectual disability, described what a $90,000 donation meant to parents like him at the programme for children with disabilities.

Neilsen announced on TVNZ1's Breakfast this morning that Conductive Education Taranaki had received the donation from the Lindsay Foundation.

“I had one phone call last week from the Lindsay Foundation and it’s not often I’m speechless, but I very much was when they called to say they’ll give us $90,000,” he said.

Neilsen said the staff and parents who tuned into Breakfast and were hearing the news for the first time would be “gobsmacked”.

Conductive Education Taranaki is the only centre of its kind in New Zealand that doesn't get ongoing Ministry of Health funding, which they've been fighting for that since 2013.

With annual costs of around $200,000, Neilsen said the donation would see the centre through the majority of 2021.

“It helps us keep going, which is hugely valuable to our children and families,” he said.

Fittingly for the Neilsen family, the announcement come on international awareness day for Pitt-Hopkins, the rare syndrome which Zac has.

Its sufferers have moderate to severe intellectual disability, with developmental delay, distinctive facial features, breathing problems and recurrent seizures (epilepsy).

“Today is international awareness day for Pitt-Hopkins, so I guess him (Zac) and his other six Kiwi friends, I guess, have a birthday, with his bros from other mums.”