Damian's Story on the Big Screen

Our home now houses not one but TWO big movie stars!

This last week, Damian and I got to attend our first film festival, the Marina Del Rey Film Festival, where Damian was featured in a documentary called “The Flying Hero Club: Behind the Smiles.”

If you were around last year, you may remember when Damian (and Brock and I) got the incredible opportunity to fly on a real movie stunt rig just like superheroes!

There were a lot of cameras rolling that day to capture Damian and several other children flying on the rig, but that was only a part of the bigger story. For the past 1-2 years, Jim Churchman and his Flying Hero Club have been working on a documentary series to tell the stories of some of the kids he’s been able to fly since starting his nonprofit - not just the exhilarating time they spend up in the air, but their normal day-to-day, their constant fights against healthcare bureaucracy, etc.

Brock was actually helping to work on the documentary and of course it didn’t take long for it to come out that our family deals with many of the same struggles that Brock was helping to document with other families. The camera flipped around and Brock was interviewed on camera, and that’s how Damian got to be featured in their film.

The film festival went great! The documentary was shown in a small theater in Beverly Hills. Unfortunately Brock couldn’t go (he was in New York for work) but hearing and seeing Daddy on screen instantly perked Damian’s interest and he even gave a couple happy squeals! Afterwards Damian posed for pictures on the red carpet with his fellow documentary “co-stars” and then I made sure to get In-n-Out on the way home (it feels kind of obligatory after an event like that – we did the same after watching the cast & crew screening of Brock’s first feature film last summer when he was in The Naked Gun with Liam Neeson and Pamela Anderson)!

I’ve gotten a lot of questions about whether this documentary will be available to watch somewhere soon, and I am honestly not sure. The creators are hoping to get the show picked up by a studio and from having watched that process play out on other shows, it can sometimes be quite a wait. But rest assured that I will be sharing it the very moment I am able to!

In the meantime though, if you are in the mood to watch something, I finally completed a short video I made to present to a pharmaceutical company!!

https://youtu.be/5XI6cq4K-Xw

A few months ago, during one of my check-ins with the Wylder Nation Foundation (our campaign’s beneficiary), they explained a relationship that was starting with a pharmaceutical company that was currently researching and developing a new drug technology. They specifically were working on a drug vehicle that could cross the blood-brain barrier.

I’m going to try not to get too science-y here: basically, the cells in our brain are made differently than the cells in the rest of our body. The brain is a vital piece of our body and so you could say the protection up there is “high-security.” Good and bad things can travel very quickly through the bloodstream, but there is a protective barrier built-in to the brain’s cells to prevent things from coming in there and messing things up. They call this natural security measure the “blood-brain barrier.”

It’s GOOD that our brain has this protective barrier, but just like it blocks the bad things from coming in, it can block medicines too. And it does. This is essentially why the infusion Damian does every other week is not the entire treatment we need. It works GREAT for the rest of his body, but the blood-brain barrier doesn’t allow it into the brain.

PS - I hope this kind-of explains why I am so passionate and relentless about fundraising and not giving up hope that we can save Damian’s life. It’s because we ARE SO CLOSE to having an answer to this disease!!

What this pharmaceutical company is doing is trying to create a drug “vehicle” that is allowed entry past the blood-brain barrier. They call it a vehicle because they would basically hide the medicine inside the drug vehicle to sneak it into the brain cells, like a Trojan Horse.

Anyways, they are at a point in their research now where it would be helpful to continue research with a specific drug to hide in their vehicle for a specific purpose and a specific disease. OF COURSE I, and the Wylder Nation Foundation, would like the pharmaceutical company to continue their research using ASMD (Damian’s disease) as the model!

So I met with a representative from the pharmaceutical company (along with a fellow ASMD mama) and the rep asked us both to present our kids’ stories to a large group of their researchers. The goal would be to explain how we have seen neurological regression in our kids and any relevant details that would help them understand a bit more about how the brain is involved in the disease progression and potentially how they would be able to track progress if they were to be given a brain treatment.

After all, a drug is only valuable if you can prove that it works.

I included a lot of before/after comparisons in the presentation to show the effects of different drugs and diet changes we've done (like how we've seen his once very big & tight tummy become soft and slender)!

The fact that a pharmaceutical company was willing to give us a microphone and let us tell our stories is a huge deal. I decided to make my presentation a video because I thought that would be the most effective way to show Damian’s regression (after all, I documented all of it in real-time on camera). As emotionally tough as it was for me to go through all the footage and re-watch what Damian used to be able to do and re-live those memories, I am very happy to say that making a video was the right move. Our presentations were received very well and I even noticed a few tears throughout the presentation. Not that my goal is to make people cry – but if people feel something, they are far more likely to want to DO something. My goal, with presentations like this as well as fundraising efforts, is never to make people sad but to light a fire and drive them to act.

I so so hope we can get people to act. We really are so close.

It is always so encouraging and hope-feeding to see people making an effort to help – I am so so grateful!!!

<3