Dear Lina,

3 years! How are you 3 years old already? I remember the day you were born as if it were yesterday. That was the most carefree day I ever had with you. I wish I’d known, so I could pay attention. Since then, it has seemed like time is warping around us; sometimes I feel caught in a never-ending loop, and sometimes I feel like we’re barreling forward at the speed of light. No matter what, I can’t seem to catch my breath.

Our entire family was for ever changed by you, for the better: you made us more patient, kinder, brought us closer together, opened our minds and our hearts, and showed us by example what strength and hard work look like. I won’t lie, I would give back all the learning and growing if I could offer you health and remove your struggles, because watching you suffer, have seizures, try to move and be betrayed by your body, try to communicate and be misunderstood, is heart wrenching. You work hard and make progress all the time, but I know that you know what you want, and that we often don’t quite get it.

Since I can’t wave a wand and improve your chances for a better life, I will walk instead. Our entire hope for a treatment or a cure lies in the hands of incredible scientists worldwide who have taken an interest in our CDKL5 family and are working tirelessly towards this goal. They hold your future in their hands – no pressure – and we are looking to them to tell us when their efforts will be ready for prime time.

While they do what they know, we do what we can. I am not, nor have I ever been, a walker or a runner. However, this year, energized by my love for you and inspired by your constant hard work, I commit to walk for you. I plan to walk at least a mile a day for the month of June, which is the CDKL5 Awareness Month. I hope to be able to take you and your brother on those walks at least once or twice per week, but if I can’t, I will do it by myself. And I know you won’t mind dedicating your birthday to our fundraising efforts, because the most precious gift you could receive is healing, and I know everyone who knows and loves you wants nothing more than to offer you that. Happy Birthday my supergirl!

With fierce love,

Mom

During the whole month of June, I hope you will all join me as I walk and fundraise to help the International Foundation for CDKL5 Research (IFCR) Move CDKL5 Forward. How does it work?

Make a donation right here on my page. Whatever amount you donate, large or small, please know that I appreciate your generosity! Our usual goal is $514 to honor Lina's birthday, but since she is turning 3 this year we tripled the goal, and we hope you will help us celebrate her properly!

Get out and MOVE in June! Want to 5K? Great! Go for a bike ride? Awesome! Get out for a leisurely walk? It's all good! Post your activities on social media with the hashtag #CDKL5Forward to help spread awareness! If you are local to Front Royal, come join me on my walks, I would LOVE the company!!

The IFCR has a goal of 5,000 miles moved and $50,000 raised for CDKL5 this June and it will take all of us to get there! Everything you need to know including links for a printable mileage tracker, event shirt information, and the mileage submission form is at CDKL5.COM.

And guess what? The top 10 fundraising Teams will be featured in real time on CDKL5.COM and at the end of the month those top 10 Team Captains will win a prize!

Thank you for supporting my Team and helping to Move CDKL5 Forward! And more importantly, as always, thank you for being part of our tribe, and for loving Lina so well!