Nyree Saxby and Nicole Laurie

As Chloe Saxby’s health continues to deteriorate from the incurable Vanishing White Matter disease (VWM), the hope for a cure or better treatment is more pressing than ever

Chloe’s mother Nyree Saxby and her sister Nicole Laurie, visited IHMRI and met with neuroscientist Dr Lezanne Ooi today for an update and budget break-down of the research project into VWM.

Two months ago the Saxby family donated skin cells to Dr Ooi to try to find a potential treatment for Chloe.

“Chloe’s health is deteriorating at the moment and we are desperate to find answers. Chloe is experiencing pain and discomfort as the disease progresses. We don’t have any time to lose,” said Nyree Saxby.

 “So far, we have successfully completed Stage 1 of the research, which was to generate stem cells from the donated skin biopsies,” Dr Ooi said.

IHMRI financed the costs of the initial stages of the research, and the organisers of The Great Illawarra Walk have donated 100 thousand dollars through their community fundraising walk-a-thon held in March.

Nicole Laurie, IHMRI Chief Executive Officer, Kara Lamond, Dr Lezanne Ooi and Nyree Saxby.

Nicole Laurie, IHMRI Chief Executive Officer Kara Lamond, Dr Lezanne Ooi and Nyree Saxby.

During the meeting, Dr Ooi also outlined the next critical stage of the project to develop brain cells from the stem cells and analyse the effect of different approved drugs.

“At this critical junction, it is difficult at the moment to put a time frame on when or if we will get results for a potential treatment but we are working hard to do all we can to help Chloe and other children like her,” Dr Ooi added.

“We are incredibly grateful to Dr Lezanne Ooi and her team of dedicated researchers who have been working long hours on the first critical stages of the research into VWM,” said Nyree Saxby.

She added, “This vital research may potentially help our beautiful daughter and many other children around the world suffering the same cruel disease.”

Nyree Saxby also committed a further 100 thousand dollars to the research project to fund a dedicated researcher for the next 12 months.

Top picture: Chloe Saxby’s mother Nyree Saxby with her sister Nicole Laurie

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