The team from the Illawarra Health and Medical Research Institute (IHMRI) believe new developments in stem cell research will help them better understand and treat Vanishing White Matter Disease (VWMD).

Holly is one of only seven Australian children – and 170 worldwide – battling the disease which leads to deterioration of the central nervous system’s white matter.

IHMRI neuroscientist, and research group leader, Dr Lezanne Ooi, told Fairfax Media researchers would grow a replica of the disease cells in a test tube, to enable approved drugs to be tested on them.

“In the lab we can convert those skin cells to something very similar to stem cells,” Dr Ooi said.

“Stem cells can become almost any cell in the body, so we can in turn generate those cells into something similar to the cells found in the nervous system.

“Then we can try to understand what it is about those cells that are particularly vulnerable, and use those cells to try and identify potential treatments that can protect those cells.”

The research team – which includes molecular biologist Associate Professor Justin Yerbury – will use new technology recently acquired by IHMRI in this Australian-first research.

Research into the rare condition has so far only been undertaken in Israel and The Netherlands.

Holly’s parents, Amanda and Daniel Burns, also donated skill cells for the research and have been directing fundraising efforts through the Holly Burns Foundation to the cause.

An infection, bump to the head or even extreme fright can cause children with VWMD to deteriorate – or can even lead to their death. 

Life expectancy is likely between five and 10 years from the onset of the disease. Holly was diagnosed with the condition when she was 19 months old. 

“It puts a lot into perspective when you are given five to 10 years from the onset of the condition,” Mrs Burns said. 

“She will lose her eyesight and motor skills. She was never able to stand or walk unassisted. 

“She used to be able to move her legs to push a walker but now she is in a wheelchair and needs help with feeding, toileting and everything day-to-day.” 

Mrs Burns said the family of seven made the most of every day together. 

Holly will begin the transition to school at Milton Public School during May.