Kayla's Page

All About Kayla


Kayla was born on September 20, 2009. Her two big sisters were so excited to finally meet her! Kayla was an easy baby - we had to wake her to feed her, she slept well from the beginning and rarely ever cried. It was around 1 year when we realized she was not meeting developmental milestones like her sisters had. We were told to wait and see what happens. When Kayla was 14 months old, we noticed she would tremble when she woke up; it looked a lot like a seizure. We saw an neurologist and had an MRI and EEG done. The EEG was abnormal so Kayla was started on anti seizure medication at 15 months old. In the meanwhile, we began physical therapy, occupational therapy and speech therapy, hoping to see improvements. The trembling upon waking never did stop once the medication was started so back to the neurologist we went. It was then suggested to begin testing for genetic disorders.

After several months of testing (Prader-Willi, Angelman's Syndrome, Fragile X and Rett syndrome) we received the news no parent ever wants to hear - Kayla has Rett syndrome. She was 23 months old. We were shocked and saddened but also had a sense of relief. The search for an answer was over and now we knew what we were dealing with. Fortunately, Kayla was able to be weaned off the medication, as we now knew her abnormal EEG was actually normal for a diagnosis of Rett syndrome.

Kayla is in second grade now - she loves school! She receives services at school as well as continuing to receive PT, OT and Speech outside school. She absolutely loves to be with her sisters, and they are amazing with her. She loves to go to the beach, swim in the pool, go adaptive snow skiing, go to Disneyland and ride her bike - just like every other 7 year old! Kayla has made lots of friends at school and continues to make steady progress in all aspects of her life. Kayla is one determined girl and we admire how hard she works.  Most importantly, she is such a happy girl! She has the best laugh and a beautiful smile.

This journey hasn't been easy but we are so fortunate to have amazing family and friends who have supported us along the way. We have met, and continue to meet, amazing people along the way. We are hopeful about research that is underway to advance treatment and a cure.



Fun Fact About Kayla: Kayla loves everything Frozen and Sofia the First!

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

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