Parents struggle with Down syndrome speech therapy funding

Can you imagine what life would be like if you couldn't communicate? Well, that is what children with Down syndrome have to overcome.

Nathanael is five years old and he is learning the colours of the rainbow. Talking about colours - or how we feel - is something most of us take for granted.

But Nathanael has Down syndrome, which means there are challenges with his speech.

Teaching him requires skill from speech therapist Fiona Kenworthy and patience from his mother Pearl Va'afusuaga.

One in every 1000 children born in New Zealand has Down syndrome, a genetic condition.

And almost all of them need one-on-one speech therapy - which actually gets no Government funding at all.

The UpsideDowns charity says it costs families an average of $4000 a year and up to $10,000.

That is money that Va'afusuaga does not have. She is a solo-mother of two children.

Her husband, David, who had a good job as a financial controller, died of pancreatic cancer two years ago. Life is difficult.

"Oh definitely. I do break down. It's hard - very hard," she says. "I have a lot of my moments. Yeah. But you've got two little ones."

She says Nathanael's love of life helps in the tough times.

"When I'm down and out and I'm looking at him and he is smiling. It's like he is reminding me. Appreciate life, appreciate the simple things," she says.

Nathanael's therapy is funded 100 percent by UpsideDowns. Helping children like this is why the All Blacks' Barrett brothers have shared the story their 16-year-old sister Zara - to give the gift of speech to others.

Kenworthy says the lack of public funding for one-on-one sessions isn't right.

"We know it makes such a difference. Yeah - it's unfair," she says.

And here is the difference it can make. Tilly is seven years old. She could only use sign language when she started therapy and two years ago she only had a couple of words.

Now, these are her favourite animals.

"Bulldogs, kittens, a puppy and rabbits," she says.

And when you have the power of speech, you can make friends. You can take the microphone.

"I can go out with my kittens, my puppy and my bulldog and my rabbit and my friends," she says.

And sign off for Newshub.

"Tilly, Newshub."

Newshub raised the issue of the funding gap for kids with Down syndrome with the Government and associate Minister Tracey Martin said it hadn't been raised with her.

But she admitted: "We have a short supply of speech language therapists".

The Minister also said she "wants to know more" - and has invited the UpsideDowns trust to come and see her.