The 16-month-old spent the first week of her life at home with her first-time parents Jasmine Meier and Luke Fennell before showing the first signs that something was wrong.

Jaundice, inability to regain her birth weight, poor energy levels and pale stools indicated a problem with her liver and kick-started the rollercoaster ride the family have been on ever since of hospital stays, medical appointments, tests and medications.

When Lola was 27 days old she had a liver biopsy at the Royal Children's Hospital that confirmed she had biliary atresia, a rare condition that scars the liver and blocks the bile ducts. When bile cannot drain it builds up and damages the liver.

Two days later she underwent an operation known as the Kasai procedure in which surgeons remove the blocked bile ducts and connect the liver directly to the small intestine to allow the bile to drain.

"Those first few weeks were such a blur," Ms Meier said.

"We were in and out of hospital, and since then we have had so many stays at the Royal Children's Hospital, and here in Ballarat," she said.

The Kasai procedure could only protect Lola's liver for so long, and it's likely she will need a liver transplant this year.

"We are just going through the work-up process to go on to the transplant waiting list now ... but we know it will be sooner rather than later," Ms Meier said.

Lola's early months were far from what the couple expected as new parents.

"We definitely experienced a sense of grief for what we thought the first few weeks would be like. It's just trying to process and adjust to a chronic health condition, hospital admissions and medications."

Lola has had eight to 10 admissions at the Royal Children's Hospital and Ballarat Base Hospital with most hospital stays ranging one to two weeks.

Grampians Health's Hospital in the Home program has also helped keep her out of hospital several times, with Lola able to receive intravenous antibiotics for some infections at home.

The biliary atresia leaves Lola more prone to picking up infections and other illnesses and Ms Meier has delayed returning to work because of the risk of Lola getting sick if she is sent to daycare.

But Lola refuses to let her medical challenges keep her down, instead dancing them away to the music of The Wiggles.

The toddler is a "cheeky little thing" according to her mum. She loves animals, she loves going to Ballarat Wildlife Park and pointing at all the animals there, and playing with her two dogs at home.

"She's just a happy little girl and she's really thriving at home. We just want her to be happy and healthy."

The family spent last Easter at the Royal Children's Hospital, seeing the Good Friday Appeal in action.

"There are not enough words to express our deepest gratitude to Lola's team of specialists for the exceptional treatment and care she receives," Ms Meier said. "It's world class treatment and we are so grateful we can access that treatment and support."

She also paid tribute to Grampians Health Ballarat where the family have had several stays and access the Hospital in the Home program.

This year, for the first time, the Good Friday Appeal is supporting regional pediatric health services including Grampians Health Ballarat.

The Good Friday Appeal will fund $2.5m of equipment and programs across the regional services to enhance pediatric care and help reduce the need for patients and parents to travel to the Royal Children's Hospital in Melbourne.

Grampians Health chief executive Dale Fraser said the appeal would fund three pieces of equipment in Ballarat - a specialised anaesthetic machine, dedicated ultrasound for women and children's services, and replaced or upgraded resuscitation cots for the sickest babies in the hospital.