Celebrities help fund NZ research to help kids with rare disease

The Hollywood producer's daughters suffer from a rare disease. Photo / Vimeo

A Hollywood movie producer backed by a host of big names is fundraising for research in New Zealand for a rare disease his young daughters suffer from.

Gordon Gray and his wife Kirsten learned in March that both their 4-year-old daughter Charlotte and 20-month-old daughter Gwenyth have the rare and potentially fatal degenerative brain disorder Batten Disease.

Gray is a movie producer best known for his inspirational sports movies The Rookie, Secretariat and The Game Plan.

Over time, having Batten Disease means his daughters will progressively lose their sight and motor skills. Most children with the disease die between the ages of 6 and 12.

"I was in shock from the moment I got the news, and I felt like if I kept moving and digging and fighting, I wouldn't lose my mind," Gray told Deadline.com.

During his research, he found a researcher in New Zealand who had worked with a "vector virus" similar to Batten that cured one of six sheep in a study.

"He was looking for greater efficacy so he can ultimately move into human trials," Gray said.

"I asked, 'What can we do to give my daughters a shot' and he said he was two to three years away at best and what I needed to do is prepare my house for wheelchairs and blindness."

Gray asked if money might help the situation and the researcher told him that while he believed he had a cure, there was no funding for it. He said Gray would have to personally fund the research himself.

In order to fundraise for further research, the Grays have formed the Charlotte and Gwenyth Gray Foundation with the backing of some major Hollywood stars, including Dwayne 'The Rock' Johnson, Rihanna, Megan Fox and Mark Wahlberg.

The stars supporting the fundraising effort have posted a short video on their Facebook, Twitter and Instagram sites, along with a plea for followers to donate $1.

The Grays are hoping to raise US$10 million ($13.9m) through the foundation.