Time is short, and sight is precious, for Sydney family living under shadow of mystery disease

For Sydneys White family, every outing, every occasion, takes on a special meaning.

Matthew, Samuel, and Kathryn White might only be seven, nine and 12 years old respectively, but they already have a bucket list, and theyre building up a memory bank that they hope will last a lifetime.

Their father Dave White says "our job is to raise them to be resilient, and to be tough and to be able to cope with all the things that are going to happen, because everything will be harder for them."

The children's mother, Beth White, knows what lies ahead.

She was only five years old when she started to develop problems with her vision.

Beth met her future husband when she was 15. By the age of 21 she was legally blind.

Specialists thought Beth had a degenerative eye disease called Retinitis pigmentosa, or RP, but Beth always questioned that diagnosis.

When the couple wanted to start a family, they sought advice on the chances of passing on Beth's disease.

"We had gone to geneticists and we didn't really get a conclusive answer, so we sort of did take a massive risk," she says.

The children all underwent testing from the age of six weeks, and, year after year, none showed signs of RP.

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Time is short, and sight is precious, for Sydney family living under shadow of mystery disease