A couple in Perth are devastated after learning that two of their children, including their newborn son, have an incurable rare degenerative disorder.
Their shock turned to tragedy when they realised not just their eldest daughter, aged four, but also their new baby boy both had the disorder.
Simon and Sam Daff first noticed something was wrong when their daughter Mackenzie started to limp in June. They were shocked to learn she had metachromatic leukodystrophy, a neurological disease that only strikes one in 40,000 people as both parents need to carry the defective gene.
There is only a one in 10,000 chance both parents could carry the gene and then only one in four children born to parents with the gene develop MLD.
After Mackenzie was diagnosed, the couple quickly got their second daughter Ashlee tested but her results came back negative. When their son Jackson was born in November he was also tested and the couple broke down on learning that he, too, has the disease.
Says Simon who was stuck in a broken-down truck: ‘I just sat there and and cried. I didn’t even know what to do. I was trying to start the truck and I couldn’t start it and I just lost it. I just put my head into my lap and cried.’
The couple say they feel helpless but want to enjoy life as much as they can.
Their friends have set up a GoFundMe page to help pay medical bills.

