Alivia is a loving, happy go lucky, ray of sunshine and rainbows 12 year old. She is always happy, singing and dancing and loving on her baby dolls or watching a music video. She loves everyone she meets and is just such a joy.
Alivia was diagnosed on February 8, 2024. For a long time I knew something wasn’t right. Alivia already had a long battle, being a warrior of arthritis and autoimmune hepatitis. Like many, we had the autism diagnosis and for some reason I was never fully able to get on board with that diagnosis. So, I kept searching. To the point I almost thought I was crazy. We finally met her neurologist and it seemed like we kept hitting road blocks. MRI normal, EEG normal, blood work yep that was normal too. She then suggested genetic testing. That’s when we found out, a gut punch, oh how I wish I was crazy after hearing terminal diagnosis. But here we are, we are living life with Alivia. We call her livi, enjoying the time we have and taking it day by day.
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