So Ava celebrated her fourth birthday a couple months ago.

The typical life expectancy for someone with Tay-Sachs is between three and five so seeing four was pretty exciting and we're just grateful for every day we have with her.

But you try not to mourn Ava while she's still here, you try to just make the best of it while she's you know while we can.

(You're still light as a feather Ava).

You know we love her today and we love her because of just who she is and you know she wouldn't be the girl that she is today without Tay-Sachs.

You know I wish things maybe would have been different but it's the hand that she was dealt it's the hand that we were dealt and all we can do is just love her.

You give her a kiss!

Oh that's kiss!

So Kristen's from Nikiski and we met here in Anchorage.

We had been dating for about a year and a half and she got pregnant with Ava.

we started noticing something was wrong at her one one-year checkup.

We noticed Ava's pupils weren't changing with the difference in light and she would slowly kind of stop tracking us across the room so we figured something was going on with our eyes so we brought her in to see an optometrist and the optometrist looked in and and discovered a pretty telltale sign for Tay-Sachs.

So Tay-Sachs is a genetic neurological disease that's passed down from your parents.

What Tay-Sachs does is it just starts to slowly shut down functions within your body so starting with uh your neurological system so she can't move, she's blind, so it just kind of starts to shut down those systems.

(Oh my goodness) It's not all sad and we have a lot more happy days than we have sad days you know we understand that there's an inevitability um but you just try to live today, live, you know be present and like I said there are elements of Ava's story that are sad but her overall story isn't sad it's it's love and it's resiliency and its strength and um it's so much of these other positive words.

Thinking about like the best memories that we've made with Ava have all been outside and those videos that I took and those photos they were important and now they're even more important because it's just something that we can't do with Ava anymore.

So I was just kind of thinking about like what do I do?

What's my purpose?

How can I turn this into something that gives me positive energy?

And it just it kind of became obvious what if we just take special needs kids that maybe can't go on adventures or can't go outside out and just get some photos and get some videos of them and let's do something memorable and let's go capture it.

I would never thought that we were going to be able to do this, but we did.

It was a blessing.

Yeah.

Adventure for Ava is a non-profit program so our list of deliverables is usually a 10 minute film and then a couple hundred photos from the family's adventure.

You know being a filmmaker, I have that going for me.

I try to tell their story the way I would want my own or our own story to be told and that's with just love and dignity and respect.

A lot of the families that we serve are fully capable of going out on adventures and going outside but a lot of them are just so busy maintaining the status quo of just every day being a caregiver that sometimes it's nice to just kind of have like a little nudge to like hey let's go break the mold, let's do something fun.

Alaska's just it's the ultimate place for adventure you know up here you have every single flavor that you would want.

You've got glaciers, you've got you know mountains, you have everything and it would be nice at some point to expand the program to be able to bring up families from the Lower 48 that maybe haven't been to Alaska and that would even be more of an impact for them.

I've been very fortunate to be able to go outside and adventure so to be able to help facilitate that to another family is kind of special.

I'm a pretty lucky dude, I get to make films, I get to take families adventuring and I get to do it all in my daughter's name.