IN THE first months of her life, Keoni Rakatau was nicknamed "chucky" by her family because she couldn't keep any milk down.

Doctors diagnosed a rare gastrointestinal disorder, biliary atresia, which destroys the ducts carrying bile from the liver to the intestine.

Affecting one in 10,000 infants, it can be cured with a liver transplant. A donor organ became available when Keoni was 18 months old.

But pediatric hepatologist Michael Storman, from the Children's Hospital at Westmead, said the Narrabeen toddler developed a second rare condition, chronic rejection, causing the donor liver to fail. Powerful anti-rejection medications caused a severe case of eczema, adding a nightly regime of bandaging to the long list of daily treatments performed by Keoni's grandmother Judy Welsh.

A second transplant, in July, seems to be a success.

"So far, so good. The liver is working beautifully and as time goes on we will be able to slowly reduce the amount of immuno-suppressant drugs so she can get on with life," Dr Storman said.

The eight-year-old and her five siblings and mum Lisa, 24, will be at the Teddy Bears' Picnic next Sunday at Rosehill Gardens.

They'll join a crowd of more than 11,000 people for a day of rides, jumping castles and concerts by Dorothy the Dinosaur and Kung Fu Panda.

For full details, see www.teddybearspicnic.com.au or phone 136 100.