Little Darling Aria
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 pediatrician.
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. See what is leukodystrophy : https://ulf.org/leukodystrophies/what-is-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 but test results can take months and sometimes up to a year to come back and till then it’s a waiting game and having no ability to help Aria other than to hope for a miracle .
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, We decided we did not want to wait for any test results to come back and asked if there was anyway of receiving them back quickly.
Through Massimo’s Mission (https://www.missionmassimo.com/) we were able to have this fast tracked and receive them in 15 working days.
Unfortunately during what seem to be an awfully long 15 days, 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. We left thinking Aria only had days to a week left but here we are 3.5 weeks later, and our girl is still fighting. We know we do not have long left with her but every day we do is a blessing, and we hold to them with all we have.
On the 5th of November 2020, we received a phone call with Aria’s results, the test showed that Aria has Vanishing White Matter (VWM) disease. See what is vanishing white matter disease (VWM) https://ulf.org/leukodystrophies/vanishing-white-matter-disease/
This is an exceedingly rare Type of Leukodystrophy and can affect any age group, most servilely is the infantile type which only gives a life expectancy of 2 years old.
Aria is now 13 months old; she is continuing to fight, and she is the strongest little girl We know.
Aria has a twin brother, Axel and an older sister Charli who will now undergo genetic testing to see if they carry mutated eIF2B gene.
We hope to be able to one day be apart of finding a treatment and a cure for VWM and all Leukodystrophies out there.
Aria gained angel wings 5/13/2021
Written by Aria’s mom.
