A LEGANA family is making the most of each day after two of its children were diagnosed with a rare genetic condition.
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Lucy and Zoe van der Molen have leukodystrophy, a degenerative disorder that breaks down a protective layer around nerves.
Their parents say it affects about one in 100,000 people.
Daniel and Olivia van der Molen, who were unknowingly carriers, knew there were problems with Lucy about 18 months ago.
They found out a few weeks ago that she had the condition.
On Monday they were told that five-week-old Zoe also had it.
While treatment options are limited for Lucy, the family is desperately trying to buy time for her little sister.
They hope a bone-marrow transplant could do that.
``It's probably not what you'd call a cure but it definitely slows the process right down,'' Mr van der Molen said.
While they're waiting for a suitable donor, they have been overwhelmed by community support and are encouraging people to register as potential donors.
Mr van der Molen said the couple had hoped Zoe might have avoided the condition.
``We thought `what are the odds of both kids having it?','' Mr van der Molen said.
Lucy, 2 1/2, was developing perfectly until she was about 12 months old.
``That's when we noticed she had balance issues,'' Mr van der Molen said.
After several tests with paediatricians, as well as physiotherapy and hydrotherapy, Lucy's condition still deteriorated.
After Lucy was tentatively diagnosed with a form of cerebral palsy, she was sent to Melbourne for further tests, including a nerve conduction study on February 15.
``That brought up straight away there was a problem with the myelin sheath,'' Mr van der Molen said.
After MRIs and a spinal tap they found Lucy had leukodystrophy. Blood samples were taken from both Lucy and Zoe.
``Because it's a genetic problem there was a one-in-four chance that Zoe could have it as well.''
He said a bone-marrow transplant was not an option for Lucy.
``If they tried to do a bone-marrow transplant on Lucy now it would accelerate the process,'' he said.
There was also a chance she would not survive or would be in a worse state afterwards.
``Unfortunately for Lucy it's just keeping her comfortable,'' he said.
Mr van der Molen said the more people on the bone-marrow register, the better the chance of finding a suitable donor for Zoe.
Lucy's cousin Elisha Deegan and friend Bianca Schipper have set up a Facebook page to raise funds to support the family.
The page was originally set up to send the family on a holiday to enjoy time with Lucy.
The family hopes to use money raised to go on short trips, including a night tour at the Melbourne Zoo and a trip down the Great Ocean Road.
``Maybe a helicopter ride - Lulu would love that,'' he said.
Mr van der Molen said he had been overwhelmed by the community support, with more than $5000 raised by yesterday.
The page has lifted the target to $20,000.
To donate visit Lucy's Holiday page on Facebook.
