Thursday, April 23, 2015


"To bear all or part of the weight; to hold up"

The defintion that appears when you type the word "support" into the google search bar.  The 7 letter word that has held Sam and I together over the past week since we learned of Sonya's diagnosis.

There are truly no words that can describe how much appreciation we have for you all.  You, the readers of this blog and you the followers of Sonya's journey on facebook.  We have not had to think about making dinner, We have not had to cry alone.  We have received emails, texts, facebook messages, and phone calls all asking what you all could do to help.

Friends, family, people we barely know, or do not even know have reached out to their colleagues, friends, and families to get us in touch with doctors and facilities that might be able to give us more information regarding CDKL5.

It is truly amazing, the team that has been formed to join us on this journey.  We know we are not alone, and we feel it.  Please know how much your words of encouragement, baked babkas and cookies (especially the babka and cookies) have meant to us over this past week.  We thank you for everything.

**If you have not found us on facebook, please be sure to visit and like Sonya's Story: A journey with CDKL5

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