Dear Lina,

Happy International Children’s Day sweetheart! This year I am behind on everything, from setting up your fundraiser to even publicly wishing you happy birthday. That happens when you’re sick, and my thoughts are consumed with worry. When your brother doesn’t want to eat, I wait until next meal. When you don’t want to eat, I wonder how long until you become acidotic. When your brother doesn’t sleep well, I wait until he is better and sleeps again. When you don’t sleep well, I wait for the seizure. When your brother coughs, I give him cough syrup. When you cough, I worry you’ll throw up again. When you inevitably do throw up, I pray we don’t end up in the hospital for dehydration or worse. How different the experience of childhood illness is, even between two children of my own.

I can’t wait for you to be fully better, so we can get back to our work. This year you’ve made such wonderful progress in moving and strengthening your body, and I celebrate every second of standing with support, every time you roll around and find your toys, every time you press a button on your play table with your head, to hear the music.

You also made some progress in your awareness and social interaction. I see you engaging with your toys, enjoying listening to music and watching TV, having fun playing ball with your brother and father. You turn your head towards me when I talk to you! I fundraise because I want more of that. I want more smiles, I am starved for giggles, and I want to enable you to be more physically independent, which I know you fight for. I can’t get that for you myself, and my impatience is no match for the pace of science.

So this year, just like the last, I will plan to walk at least 30 miles during the month of June – an average of at least one per day, although this year I’ll allow myself to make up for lost days and miles, I hope you don’t mind. For every mile I don’t walk, I will donate $4 (your age) to IFCR in addition to our planned donation, so a win either way.

Thank you for another wonderful year spent together, for motivating me with your hard work, and for the excellent hugs you give me lately. Your hands around my neck are what happiness is made of.

With love,

Mami

During the whole month of June, I hope you will all join me as I 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 4 this year we quadrupled 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!! If you would like to actively track your miles, join my team on JustGiving and gather miles directly for our final count. Let me know if you need more information on how to do that.

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!