Aria’s life started off by achieving normal milestones as you would expect in a baby. She was laughing, sitting and had good leg and arm strength. At around 9 months old we noticed that Aria had not rolled or sat up in a while and she was losing the ability to hold her head up.
An MRI was conducted and the results changed our lives forever. Aria had abnormal white matter in her brain also known as Leukodystrophy a group of rare, progressive, metabolic, genetic disease that affect the brain, spinal cord and nerves. Aria has recently been diagnosed with Vanishing White Matter Disease (VWMD), a form of Leukodystrophy. It is so rare that there is very little research into the disease and currently, no cure.
Research holds the key
The Illawarra Health and Medical Research Institute (IHMRI) in Wollongong, NSW, is the only institute in Australia researching this rare disease. Help fund this research by donating to IHMRI this year so that other children like Aria, have a hope of better treatment for VWMD. Thank you, from Aria's family.