The story of Louise
Aria was born on 5-10-2019, alongside her twin brother Axel.
Aria’s life started off by achieving normal milestones as you would expect in a baby, she was rolling, laughing, sitting, holding her head up and had good leg and arm strength. Aria always had trouble drinking bottles and eating any solids but still managed to get in enough to keep her going, all alongside a feeding specialist and a paediatrician. At around 9 months old we noticed Aria had not rolled or sat up in a while alongside this it was also apparent she was loosing the ability to hold her head up and was loosing complete muscle control in her neck. After consulting with her doctor and seeing the predication they decided she was malnourished due to her lack of feeding ability and admitted her to insert a feeding tube, while in the hospital the doctors examined her and also had concerns that she was going back in her millstones and was loosing the ability to what she should be doing . They did a MRI and after that our lives changed forever. It was discovered in the MRI that Aria had abnormal white matter a form of Leukodystrophy.
Aria was in hospital for 2 weeks and underwent many blood test to help see if they can work out the type of leukodystrophy she had.
At Aria’s next follow up appointment we discovered in her hearing test that her hearing in both ears was now effected and that Aria was getting worse by the day.
Aria got even worse and ended up back at the RCH and when she left a few days later she left under palliative care. Aria’s condition in such a short time has overtaken her small body and we were faced with loosing our beautiful girl without even knowing what was happening to her.
On the 5th of November 2020 we received a phone call with Aria’s results, the test showed that Aria has VWM (Vanishing White Matter) disease the infantile form which only gives a life expectancy of 2 years old.
Aria is now 16 months old; she is continuing to fight, and she is the strongest little girl We know.