Phase 2: Ellen and Onward!

Thank you Heather DelHoyo for this birthday shoot! <3

This last week I felt like I was "quivering with emotions" - is that a phrase? I just mean that I was (and still seem to be) shifting from strong emotion to strong emotion really quickly: Hope, Fear, Anger, Gratitude, Defiance, Discouragement, Determination, Humility, Sadness... they all just zip through my head one after the other within seconds. Literally "feeling all the feels" over here...

We had a lot going on last week - a lot of really encouraging moments, but also some worrisome moments.

I know I need to be careful about how I balance talking about both the happy and the sad parts of this journey - I don't mean to be discouraging to anyone. Quite the opposite - I want everyone to feel as hopeful as I do about the treatments that may soon save Damian's life! And the number of people starting to rally around Damian and our little family is giving me so much strength!

But I also want to be real since this blog is also serving as a family journal right now and I don't want to sugarcoat things. It's just that, on top of everything, I am continuing to see Damian change week to week: yes, the therapy is helping his little muscles grow and he is getting more babbly. And it's now been a few days since Damian stopped taking his seizure medications, which I think has made him less irritable and more of his care-free self. But I also see him losing a little more cognitive focus, being a little more wobbly, and tiring out a little more quickly. Its really really hard to watch. I am constantly listening to a clock ticking loudly in my head. All the time. Hence the emotional "quivering" I've had: So grateful and so anxious. So fired up but also so scared. We really need this first "small molecule drug" and fast!

Truly though, I am feeling more and more confident in our campaign and I cannot tell you how BLESSED we are by you, to have gotten us this far! Even though the rate at which we are raising money and spreading awareness has leveled at a plateau, I think that just means we need to expand our reach. So this week, we're beginning "Phase 2" of our campaign: making a physical presence in the community and also tapping into the influencer space.

How you can help in Phase 2

I am so grateful to all of you that have reached out and asked how you can help! Continuing to share our story repeatedly is truly going to be what saves Damian. Reposting our posts from Facebook and Instagram are currently what is driving the campaign's progress, so thank you so so much ! We'll soon be ramping up TikTok and Twitter accounts as well, per the suggestion sent in by many of you.

This week, we're beginning two initiatives. The first is placing physical donation jars in businesses. This effort will require the help of people reaching out to businesses, designing flyers, printing flyers and taping them to the jars, and dropping off jars around town. For this, as well as other initiatives we start, I've made a new tab on this site (titled "VOLUNTEER") for anyone willing and able to help to let me know!

The second initiative is our first really big influencer target: the one and only ELLEN! Influencer reach-out is a big task, and one email here and there to celebrities has a low chance of being seen. I know that whenever I get bombarded with emails, lack of time makes me become more random with the ones I open up first, or even at all (for better or worse), so I can only imagine it's much worse for people with large followings.

That's why we're far more likely to get seen if we work together and all send emails to the same person. My friend and I have put together 4 steps to nominate Damian to the Ellen Degeneres Show for her final season. You can see these steps by CLICKING HERE. We even included some sample text to submit in case you're in a hurry, but anything you write that is more personal is best!

Onward

If it's not obvious, I find a lot of solace in doing something productive. This campaign is such a source of encouragement and hope, and I can't tell you how much it means to me when I see you sharing our story and joining our fight to #SaveDamian. Thank you so much for being here. Let's keep going. We can do this <3