Alivia's Page

All About Luisa

Luisa was born a healthy and content brown haired baby girl. Her chunky, beautiful cheeks were as wide as her thighs. She brought great delight to her parents and two older siblings. Luisa's first year of life was typical but quiet. The only sign something was amiss was her delay in crawling and the odd pattern of rolling around the floor when trying to navigate a room. Only when she reached 16 months and could not stand did we consider starting Early Intervention to work on physical therapy. Speech therapy and occupational therapy were quickly added after Luisa was diagnosed with a "global developmental delay."

Only after we googled "purple feet and delay in walking," did we consider "Rett syndrome." Almost every feature seemed to fit our beautiful blue eyed girl. She was eventually diagnosed by Dr. Percy on July 3, 2014, at the age of 20 months. Since then she has learned to walk and has retained some use of her right hand. She became a big sister in September of 2015 and she excels at loving on her baby sister through kisses and pats but often can be found stealing food off the baby's tray. Currently she uses her eye gaze augmentative device to communicate with her family, teachers, and friends. Luisa's name means "famed warrior," and although she did not chose her battle she fights valiantly everyday. We love our baby girl and pray one day there will be treatments available to make her life a bit more easy.


Fun Fact About Luisa: Luisa's eyes are a piercing blue topaz.

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Support Luisa's fight against Rett syndrome. Donate today in honor of Luisa. 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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