“They have been great.”

They are the words of Harness Racing Victoria chief steward Peter Chadwick, who’s reflected on the remarkable support the Royal Children’s Hospital has offered his family.

Chadwick’s daughter Alicia, 11, was diagnosed with leukodystrophy, a progressive neurological disease.

“It basically means the white matter in her brain is degenerating and she has gone from walking four years ago to being in a wheelchair now,” Chadwick said.

Alicia recently had major surgery at the Royal Children’s Hospital, where she has had 35 specialist appointments over the last 12 months.

Chadwick paid tribute to that care ahead of the hospital’s Good Friday Appeal, which Harness Racing Victoria supports including across March 29 raceday activities at Stawell (day) and Cranbourne (night).

“She was in the hospital 10 days ago for a PEG (percutaneous endoscopic gastrostomy) operation … to put a tube in her stomach so she could have external feeds,” he said.

“There are people from multiple departments that look after her, it is what it is, and we make every day the best we can for her. The doctors are very supportive in trying to find the best information for you.”

The specialised care at the Royal Children’s Hospital was among the reasons Chadwick moved to Victoria and, in November 2022, accepted the position at HRV.

“They have actually got a white matter disorder clinic within the RCH, which half specialises in her condition,” he said.

“They have been great, and we have a good team around us. I have been speaking with our neurological paediatrician and they have been really good and full of confidence.

“The hospital stay she just had, she was well catered for and she had caring doctors and nurses.”

That is particularly crucial, because there remains no cure for leukodystrophy.

“Her condition is progressive, to be perfectly frank we don’t know what the clock is,” he said. “It could be a short clock or it could be a long clock and it could go slow or fast. Our mission is we make the most from life for every day.”

If you would like to make a contribution to Harness Racing Victoria’s support page for the Good Friday Appeal click here.