Alivia's Page

All About Alivia


Alivia (Liv) was born a beautiful, healthy baby. At around nine months, I began to worry that she wasn't responding to baby sign language, and soon she began losing interest in her toys. Deep down I knew something was wrong but couldn't figure it out, even with my background in Psychology and years of working with kids with developmental disabilities. Liv was happy, healthy, and as beautiful as ever. When she didn't crawl, pull up to stand, or begin walking by 12 months I had her evaluated. After months of taking her in for blood work, we received the diagnosis of Rett syndrome. It was devastating. I grieved for about four months, then realized our Liv Bear was going to inspire so many people. She immediately began physical therapy, worked so hard to gain control of her muscles, and became so much stronger. She is in preschool now, and receives PT, OT, Speech Therapy, and Music Therapy. She has an amazing team who work with her everyday and love her so much. Liv loves going to preschool, her favorite part being circle time with books and singing. She loves it when her big sister, Addy, reads to her (her favorite author is Tim Bugbird). She loves laughing at her puppies when they tickle her feet or rest their heads on her legs when they know she's having a bad day. She loves cuddling with her dada, and she loves smelling the herbs and watching butterflies in the garden with her mama. Alivia has taught us about hope and inspires us to find strength even when we think it's impossible. She is our lovable Livi Bear and we couldn't even imagine life without her.


Fun Fact About Alivia: Alivia loves splashing in the pool at Papa and Kiki's house, going to the farmers market, and watching hummingbirds in the backyard.

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Support Alivia's fight against Rett syndrome. Donate today in honor of Alivia. All money will go to to help accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity. 

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