All About Elena

Elena was born February 25, 2011 to two very excited first time parents.  She was such a happy baby and developed right on schedule until she was about 9 months old.  We noticed changes in her behavior and she stopped meeting milestones.  At her 12 month pediatrician appointment we were referred to a neurologist due to our concerns.  After blood work, an MRI, and an EEG, we waited.  On August 18th 2012 we received “the” phone call.  In that moment we learned what Rett syndrome was.  Elena was 18 months old and things would never be the same.

We had our answer and, although we were devastated, we now knew what we were fighting.  We went to work trying to support her and give her the best possible chance for continued development.  Thankfully we were referred to Katie’s Clinic for Rett Syndrome right away.  We never would have expected that everyone there would become family.  They helped us so much on our journey and gave us so much hope.

In 2013, Elena’s little brother, Luca, was born.  We moved to San Diego to be closer to family.  Today, Elena is flourishing.  She is such a happy girl and has so much to say with her eyes.  She will be starting Kindergarten in August 2016.  She loves school and is so excited to hang out with her classmates.  Elena is also involved in PT, OT, Speech, Hippotherapy and swim lessons.  She is very active, loves to be outside and loves spending time with her family.  She lights up when she listens to music and loves dancing.  Her favorite place to visit is the beach and she doesn’t stop smiling as she walks through the waves.

While we never would have wished for her life to play out this way, Elena’s determination has been an inspiration to our whole family.  Her smile lights up every room she enters.  She has made us a stronger family and we will do anything in our power to let her experience this life to its fullest.


Fun Fact About Elena: Elena's favorite son is "Three Little Birds" by Bob Marley.

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