With a heavy heart, we are racing against time to help our little Armani.
After many appointments, tests and months of anxiously waiting, on Friday 9th February 2018 we had a video conference with the head of the metabolic team from Lady Cilento Children's Hospital to receive Armani’s diagnosis.
Armani has been diagnosed with Metachromatic Leukodystrophy (MLD) which is a rare, genetic, degenerative neurometabolic disorder that affects approximately one in 40,000 people worldwide, primarily children.
We have been told that Armani will likely lose her battle to MLD by the age of 10 (she is 4 years old). Her quality of life is expected to deteriorate and she has a 50% chance of being in a wheelchair within the next 2 years.
We were advised by the doctors to go home and make the most of the time we have left with her, however we are determined to fight this battle to the end. We have researched and reached out to doctors and families affected by MLD, both within Australia and overseas, to see what we can do to prolong this and assist Armani to have the best quality of life.
A bone marrow transplant is possible for Armani, and the Brisbane transplant team are willing to do the transplant. This means relocation for Armani, her mother Renai and her Nana Nickie.
Your donations will go towards and impending medical bills (eg additional phyiso), relocation costs, plus living costs for Armani’s brothers that will be staying in Innisfail with family.
Hopefully this will be one less thing for Renai to worry about - that her boys will be okay, and when it’s time to come home she will still have a home and the bills won’t be piled up.
Your donations will also assist in monthly flights for the boys to be able to see their mother and sister.
Please help us, help Armani. We’re not going to give up on her.
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