Sunday, June 7, 2015


All challenges give way to a desire for a solution.  We hope when we are faced with a challenge that the road is not overly bumpy.  That the road will be short.  That there will be no forks.  That there will be a miracle ending the challenge and every person who can, will benefit from it.  

As I sat feeding Sonya on the couch last week I was wrecking my brain thinking about what we could do to raise awareness for CDKL5.  It is a thought that enters my mind 100,000,000,000+ times a day.  I have a yard sign, we printed awareness signs for all the places the kids have activities, we changed our Facebook pictures, Sonya has her own CDKL5 business cards.  Still, I felt like we could do more.  Sam walked out of the family room at that exact time.

He said "you know, wouldn't it be great if there were like push ups for cdkl5? Like the ALS challenge? But whatever..." I replied with "Wait a second...that would be a great idea, we could do 5 push ups and tag 5 people" In 5 minutes the #cdkl5challenge was created.  In 5 short minutes I had real hope we could find a cure.  Imagine what this could do!

We have posted our video on Twitter, on Facebook, on Sonya's website, on her Facebook page.  The International foundation for CDKL5 research has posted it on their Facebook page.  We know of 85 people who have been tagged in this challenge. That's 85 people we know of who are giving us hope.  Giving CDKL5 hope.

YOU all are giving us hope.  Every day that you share Sonya's story gives us hope.  Every day you share your #cdkl5challenge video, YOU give us hope.  We have hope because of YOU.  We are so appreciative of YOU!!

Some days the only thing that gets me through is the slight chance of hope that there will be a cure for Sonya and her friends.  The smile that I wear on my face due to hope is a real smile.  When I feel down and sad about the things Sonya is struggling with and what we as a family struggle with because of CDKL5, I can lean on hope.

We all pray that if we have to endure a challenge the outcome will be favorable. We hope we can appeal to those of you who have yet to participate in our challenge.  Our ultimate goal is to try to make our journey as well as the journeys of other children with CDKL5 mutations a little more smooth.  We hope the #cdkl5challenge can reach far and wide (and maybe even get to Ellen :-)).

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