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(subtle music) - [Dan] As a parent, you want to give your kids the things you didn't have, right? So like for instance, I have photos of my sister, but I don't have a single video

of her and it's still something I wish for. My goal is to make sure Reagan won't have to say the same thing. (uplifting music) We had a lot of things in common, we both liked to

hike, we both liked to be outside. Our first date was going out on a hike. - [Kristen] On that first date, we talked about core values and how all this stuff aligned. As you get older, you

know what's important and what matters and what you want in someone. (uplifting music) (uplifting music) (uplifting music) I was ready and that's something I've always wanted.

I just didn't know if Dan was ready. (baby crying) - [Nurse] Four pounds, 15.4 ounces. She's itty bitty. (baby crying) (Dan singing) (laughter) (uplifting music) (baby laughing)

(baby cooing) (baby laughing) - Not only Kristen and I being able to continue that, but now bringing in Ava, we took her all over creation. Will you be ready for adventure? - We're

ready. (uplifting music) (uplifting music) (uplifting music) - [Kristen] My favorite memories was took the day off and we hiked and we had this beautiful sunny, gorgeous day and that was two

to three months before her actual diagnosis, although we knew something was up, it was before things really hit us. (intense music) - [Dan] At the one year checkup, the doctor said, I

don't want to alarm you, but I'm very concerned. You know, at the time she was given a blanket diagnosis of CP or cerebral palsy and she got put into physical therapy and we were

in therapy, physical, occupational, speech. We were in the hospital on average, about three times a week and that continued on for months. (laughter) (intense music) (intense music) -

[Kristen] Go, Ava go. Go. (intense music) I thought we would come home with some glasses for Ava, you know those cute little blue ones that sit on her face and we got pretty much like the

worst thing you could get at any appointment ever if their kid was at the eye doctor. She saw something on the look on her face. - [Dan] The optometrist had discovered little cherry red dots

in the back of her eyes. - [Kristen] She said she had seen it one other time in her life and most eye doctors never see it. (intense music) - [Becky] While those children may appear normal

and healthy at first, children affected with Tay-Sachs begin to stop meeting their milestones, approximately at about the six month age range. These children will become blind, paralyzed,

and they will suffer seizures daily. From that point on, it is a complete and total regression until death. (intense music) (intense music) (intense music) - [Dan] Look at you. Ava,

she's a bird. - [Kristen] At one of Ava's appointments before she was two, we had talked to the neurologist and he'd mentioned we would qualify for Make-A-Wish. Ava needs to

be two or two and a half, whatever the minimum was, but we weren't quite there. Thinking of Ava's future is just, it's difficult, so even thinking out a year or half a year,

was like, oh, I'm not going to even think about that, it's just too tough. - [Dan] We'd take Ava out on her wheelchair and out on her strollers as much as we could, but we

certainly weren't, you know, we weren't hiking mountains and we weren't going camping and stuff that we used to do. - [Kristen] As Ava grew and the disabilities became harder,

harder to manage, that's become more of a challenge for us. She's susceptible to getting sick, so even a common cold can be really tough on Ava. It's exhausting on her,

it's exhausting on us and it could mean, you know, a week in the hospital. People say, how do you do it? Like, I wasn't given a choice. You know, you're not given a choice,

you don't, you just do, like simply put and any parent would do what you had to, or what you could for your kid, so you just do and you never get a choice. - [Dan] Tay-Sachs is

considered an ultra rare disease. In America, one out of 250 people are a carrier of the disease. Carriers have two copies of the gene, one healthy and one damaged. When creating an embryo,

there are four possible outcomes of equal chance. The embryo can receive both healthy copies, one healthy copy, and one damaged copy from each parent, or both damaged copies. This means with

each pregnancy, our odds of producing another affected child like Ava is 25%. (subtle music) (subtle music) (baby crying) - [Doctor] You did so good, so strong. (subtle music) (baby crying)

- [Kristen] I don't know if she'll ever realize like how important she is. Ava's pediatrician came by and, and she said, we're given the kids we need and I don't

think that could be any more true for Reagan. In the midst of everything we we're doing with Ava, Reagan's just happy and easy and it's exactly what we need. She was always

curious what Ava would do when she'd hear her sister, whether you know, new noises would freak her out, would maybe cause a seizure, so as soon as we brought her home, she just wailed

and Ava lights up with this biggest smile, like I wonder what else could make Ava that happy? (baby crying) (subtle music) (subtle music) (subtle music) Make A Wish got a hold of us, you

know, Ava's eligible, what would you guys like to do? It was hard to figure out what can we do with a special needs kid and what's safe for her and how do we still get out? Our

first thought was Maui because Dan and I had been there a couple of times, Ava had been there once before and we just thought that would be a great place for Ava. So we're looking at

what can we do in Alaska with Ava to make new memories and just enjoy time with her. - [Theresa] The Redfield's like to camp and you know, Ava likes being outside, she likes to feel the

sun on her face. - [Kristen] Being that Alaska is so spread out, day trips with Ava was not practical. Do you feel so pretty? Everyday, pretty much from here on out, is a day that we

thought we'd never have with her. The summer is really crucial for us as a family. (cheering) I'm sure her wish would have been just more family fun and playing with her sister.

(subtle music) - [Bob] Great Alaskan Holidays and Make-A-Wish Foundation have worked together in the past. - [Kristen] Oh my gosh. It's so pretty. - [Theresa] We came up together with

the idea of doing a travel trailer. - [Misty] So her and I were in tears actually, when, when we thought, as long as I've been there, I've never seen that kind of a wish. - [Dan]

Plenty of room for setting up her therapies, clean space for the medication, it came with a generator to power her equipment when we weren't hooked up, it came with everything that we

needed. - [Bob] More so even in 2020 than ever before, it's very important for us to give back. (laughter) (clapping) - [Dan] We already have a ton of photos of the girls, but a lot of

them are just inside the house. Our goal for the summer is to create as many memories outside with the girls. I imagine camping for anybody with kids takes a lot of time and effort,

especially with Ava, you know, she travels like a rockstar. All of her medications, all of her respiratory therapies, it's not like if we miss something, you know, we could just go to a

store and pick it up. (intense music) (intense music) All right. And just like that. (intense music) It's a good kind of starter place. You know, we don't have to go very far. It

was a pretty easy drive. It's a lot of trailer for my little truck. When I was a kid growing up, some of my best memories were camping in a tent and just being outside and I think

that's really important for us. (baby crying) - [Kristen] My hope was just to like keep everybody healthy and enjoy the summer and enjoy Ava and enjoy each other, just get us out of the

house and get us out of Anchorage and just get us out, places that we've never been, Ava's never been. It's so nice out. How was your first night in the camper? Ava. Push

your sister. Don't push her too fast. Most people, they look at Ava, they just see, you know, maybe one, two expressions. Because we know what Ava was, you know, when she was six

months, and nine months and what she was still like at 18 months, we see those things. Yeah, are you talking? (laughter) (laughter) (cooing) (cooing) - They're still there, they're

just so faint, but they've never really disappeared. Come on, you can do it. (laughter) - This summer has been real special because of the Make-A-Wish with the trailer. It's

allowed our entire family to get together multiple times, many more times than we do in a typical summer. A chance to see grandparents on a, almost a weekly or semi-weekly basis, which has

been wonderful, so you've got to see her develop, - [Diane] Being able to share the camping, the trailer, and going places that I've never been before, living in Alaska for many

years, this has been, been a great experience for me just as well. - We can tuck it up, right? You get really appreciative of seeing a handicap sign. Those become like little gems of places

because we can go there as a family. (water splashing) - [Dan] Two things that never leave her side is her suction machine and her feeding pump. - [Kristen] Her food was never pick it up

with two fingers, eat a Cheerio type and it started to really slow down and her purees were coming back out her mouth. We got advised to do a swallow study. What we found is that she was

aspirating it. Pneumonia was one of the ways that you lose these children. For me and for Dan, it was a no brainer at that point. All of her foods and medicines, everything went G-tube. She

filled out and she looked happier and healthier and it's like the best decision we made for her. (uplifting music) The first summer together, we spent some time kinda exploring the

Earth. - [Dan] I think Susitna had a little place in our hearts just being a cool spot that we had been to before, that we had memories. (crying) (subtle music) So last time Kristen and I

were out here, Kristen had this little bug zapper and she was clearing them out. At about 11 o'clock last night, they grouped up, they sought vengeance. We were honestly looking for

every little crack, crevice, how they were coming in. We were shutting windows that even had screens on them. It was war last night. Kind of surprised we made it out of here alive. -

[Kristen] It started like at midnight, like I killed a couple of them. I'm like, Dan, do you have any mosquitoes? He's like, yeah and then like, they didn't stop for two or

three hours. - [Sister] They suck honey, I'm sorry. - No, it's okay. - [Sister] What are you guys thinking for the day? - [Kristen] I think we're going to not stay the night.

- [Dan] Because Ava can't see very well, if at all, it's important to get her other senses excited. The best place is probably Seward. (subtle music) (fire crackling) (wind

blowing) (waves crashing) (seagulls calling) (subtle music) (birds calling) If you can give her some sounds to listen to and then some movement and then the sun on her face, like that's

the ultimate for her. (subtle music) (subtle music) (baby cooing) (Ava cooing) Throughout the day and then at night, positioning plays a really big role. Where her arms are, where her legs

are, where those contact points are, how her spine's aligned, how her hips are situated. We have bunch of little stuffies that we can stuff in between her legs to keep her hips in

alignment. Nights can usually be pretty hard. You're constantly up, you're constantly suctioning, you're constantly flipping her over. So it's usually not a whole lot of

sleep when, when you sleep with her. (suctioning) (subtle music) (waves crashing) (seagulls calling) (laughter) - Oh, it's still going a little bit. You got a little bit more behind. -

Did you get that on video? - [Dan] I did. (laughter) Those are precious memories that we're going to want to keep. - [Diane] I say we get a fire started soon. (subtle music) (subtle

music) I see in her, when we're out, being around the voices that she's familiar with. I feel like it's been a good experience for her, I think she seems to enjoy it. (subtle

music) - [Kristen] We got a sight that we were eyeballing. It's got a view with a glacier, it's a pull through sight, so even though Dan now knows how to backup really well, it

should be it a good quick pull in, set up, set up camp. (subtle music) - [Dan] You know, we have pictures for days of Ava in her hiking pack, going all over the place. Now Reagan is old

enough and she has enough muscle control that, you know, it's time to put her in the same pack Ava had. - [Kristen] Get some movement going, some fresh air. We don't have the vest

with this, so any kind of movement. - [Dan] She really liked it, she started to track things. It was a totally new experience for her. At Willow Wall, they have a great boardwalk area, -

[Kristen] With Ava's wheelchair, it's hard to beat that. - [Dan] You know, it offers that vibration and that just helps to clear her lungs out. Because she's not as mobile as

most other kids are, she gets a lot of buildup in her lungs, so we have to twice a day, make sure that she gets her respiratory treatments. She inhales all the albuterol and that kind of

helps break up some of the gunk in her lungs and then we put her on her vest. The vest simulates moving around, that bouncing and that activity keeps all that fluid out of her lungs. So

Kristen, what are we doing today? - [Kristen] Photos, family photos, wedding family photos, minus the wedding. - [Dan] So explain the situation for me. - It's 2020. Ava Rose. (cheering)

Is that so fun? Ava. How fun is that? - [Dan] Ava, look at you. - [Kristen] Can't really have a wedding during a pandemic with Ava and when all your family lives out of state. - [Dan]

We canceled everything except for the photographer. - [Kristen] Those are some important parts of the wedding would have been. (uplifting music) (uplifting music) (uplifting music) - Well,

I'll never make that mistake again. So we pulled up to the spot here, there's a little bit of a slope. I didn't end up chalking the tires. I was putting the jacks down and all

of a sudden, the trailer almost slid right into my truck. I mean, it was like a foot away from it and ended up stopping, but that's my lesson for today is chalk the tires. It could

have been so much worse. - [Rick] Because of the miracle that happened with this camping unit, the family has been getting together multiple times in different camping locations, getting

outside and having a great time with Ava. During the time of this COVID-19 deal, we can still do family get togethers and be just with ourselves. She's a little miracle and it's

really been wonderful to experience life with her as well. (cooing) (crying) - [Kristen] This is kind of our first time being a parent again, so all these things are just amplified. - [Dan]

Oh, you're so strong. Whoa, where you going? So strong. You know, one day when we were at home, you know, she got up on a tabletop and she started rocking back and forth and then pretty

soon, she just put one hand in front of the other and then didn't stop. Kristen and I have been parents for three and a half years and we never saw a crawl. (uplifting music)

(uplifting music) - [Kristen] So I think gentle is probably Reagan's first word, 'cause anytime she's near Ava, we're real gentle. - [Dan] Oh, did you just give her a

kiss? Give her a kiss. Ah, kiss. (subtle music) - [Kristen] Ava, we're packed up. Is that a smile? I see a smile. Got your food on, section, everything you need. Ava, do you have

anything you want to say? Huh? Do you have anything you want to say? I'll take a cute smile, it's perfect. I love you. Yeah, okay. Is that what you think? You had fun, huh?

(uplifting music) - [Rick] My favorite spot is probably the Court's Creek that's on Kenai Lake, simply because it's an area I always wanted to camp, but hadn't had a

chance to do it. (uplifting music) (uplifting music) - [Dan] The best way to describe it is, it's a bucket seat that sits on top of a bean bag and what it does is it just provides all

the support that Ava needs. It was originally purchased a long time ago by one of our Tay-Sachs community members. - [Kristen] She's the seventh affected child to have it, so it's

been passed down from child to child to child. - [Dan] And when she outgrows it, then it'll be passed off to the next kid. - [Kristen] Who knew the glorified bean bag would go so many

places? - [Dan] For a special occasion? - For Franci's birthday. - [Dan] Franci's birthday. - Ava, sing happy birthday to you. ♪ Happy birthday to you ♪ ♪ Happy birthday dear

Franci ♪ ♪ Happy birthday to you ♪ - [Kristen] Our world would be, I think a lot tougher without friends. They're kind of like our, our rock in this midst of Tay-Sachs craziness, yeah.

(subtle music) - [Dan] Originally when our optometrist diagnosed Ava, she said, I noticed something and the last time I saw this was about 20 ago. She had diagnosed a little girl named

Emily. - [Franci] In 1999, I met a family with a little girl that had Tay-Sachs disease, so I used to help with all of her daily care and her night care. In my opinion, quality of life,

everything that they can experience in their short life span is important. - [Dan] So that includes finger rubs? - That includes finger rubs and finger rubs and massages. Right, and walks

outside. (subtle music) So with Tay-Sachs disease, most of the children can not manage their own secretions, so therefore they can't cough up everything and get it up and bring it out.

We want to remove all those secretions, so they don't aspirate back into their lungs and get pneumonia. - [Dan] Saliva that falls into her stomach, that liquid has to be vented or

ejected, or else she'll have a seizure and throw it up. If she throws it up, then there's a possibility of her aspirating it. She gets fed through her J port, which goes to her

duodenum and then the G-tube is there just to vent the excess gas and liquids. We'll typically vent 10 to maybe 20 milliliters every couple of hours, but at this point, things are

starting to really ramp up in terms of volume. We have no idea why. She had a really hard night and she threw up a couple of times, so I feel like there's a lot of stuff just in her, in

her lungs, so we need to do an extra good job today of just breaking that stuff up and she started wheezing really hard in the middle of the night and the last time I heard that, we had to

take her into the hospital. She had bronchiolitis and then that turned into aspirating pneumonia, because she was throwing up, so it was like the same thing last night. We just can't

end up in the hospital, not right now. (intense music) - [Kristen] You know, we didn't know what was going on, but she wasn't looking good and things were just not right. (intense

music) (intense music) It was kind of like pulling teeth, trying to get like an answer and get going in the right direction. It was just hard on Ava. (subtle music) Because we know

Ava's Ava, things became worse pretty quickly. - [Dan] Going to the hospital was always kind of bittersweet. Because Mandy was an employee at the hospital, there's a little plaque

there that recognizes her. So every year on her birthday, I would just post a picture, but I don't have many pictures from around that time. I wanna make sure that Reagan has plenty of

pictures, plenty of video, plenty of memories that she can look back on and not be limited. (subtle music) She had a large obstruction in her bowels, prohibiting anything from moving down,

so it was just coming up. - [Kristen] She was very dehydrated, she had a UTI. (mumbling) - [Dan] Day five, yeah, she finally cracked a smile and you could tell like, okay, the antibiotics

are kicking in, she's re-hydrated, she's got her food, things are moving. - [Kristen] Anything you wanna say right now? Say, get me out of here. (subtle music) (subtle music)

(Reagan crying) (subtle music) - [Kristen] It's a lot of work, I mean, caring for Ava is a lot of work, special needs kids are a lot of work, but if you're doing all that work,

you're not afraid of doing some more. Getting her out of the house is gonna be a lot of work, but it's worth it because when you look back, you are really happy. We found a trail

where we were doing something we love as a family. The work doesn't weigh on you later, as so much as possible regret. (subtle music) - [Diane] It's meant a lot to Kristen, having

the ability to get out and go camping and spend the time with the family. I think it's been very special for her. Sitting around a campfire and just warming up and having S'mores

and hot dogs is just, it's my favorite, just being together as a family. - [Dan] You know, we do a lot of caring for Ava, caring for Reagan, trying to care for each other. It's

always nice when the grandparents can watch Reagan and Ava and Kristen and I can do something for ourselves. - [Kristen] Seward has some gorgeous sights and this is definitely a top one.

(upbeat dubstep music) - [Dan] It was nice to be able to spend a little bit of time with Kristen again and kind of reconnect with some of those things that we had passions for. (subtle

music) - [Kristen] It was definitely something that I've been wanting to do and I got it. Dan also felt the same way. - [Dan] So this is the place that we started off at, Williwaw, and

this is our second to last spot and hi. How's it going? Huh. The blue jay literally just landed right on the camera. Oh, and then it took a freaking terd. We got one more trip this year

and then we're gonna winterize this thing and wrap it up. Told you, this bird is just like haunting me. (subtle music) (subtle music) - [Kristen] I definitely think we've evolved

faster, we've had to address harder issues, most parents don't face a terminal illness in their child. That makes or breaks you, but it definitely um, puts some strain and it

forces you to go in a direction and so, thankfully Dan and I have gone in the same direction and we both do this for Ava and are good parents to her, so. (subtle music) (uplifting music)

(uplifting music) - [Rick] Where we're at today is a state campground out by Denali and I'm not gonna give out the names of it 'cause it's a wonderful place and we just

discovered it. (uplifting music) (uplifting music) - I'm very spiritual, so I think she is my little angel. (subtle music) She was given to us, we didn't know we needed her. I

think most kids aren't like that, you know? (subtle music) Without her being who she is, our lives would be a lot less um, would not be as rich. - [Diane] I see those smiles. - Ava.

(subtle music) - [Misty] They send us emails with their updates on the experiences that they have. For all the wishes that I've done, I've never had a family send the pictures

after, so for me, that's really neat to see. - [Theresa] It was really exciting to see the whole process. It was my first wish and to see that take place was very amazing. - [Misty] You

always remember your very first one and every one of them, there's something special that you take out of that. - [Bob] You know, it's a beautiful state out there, why not help as

many folks out like the Redfield's as we possibly can because everybody deserves to adventure. (subtle music) (uplifting music) - [Dan] It gave Ava the chance to return to the place

she loves and to continue those adventures she started off with and for Kristen, it was the opportunity to spend the time with her family in the outdoors and leave nothing behind and as for

me, I got my chance to give Reagan the things I don't have. The greatest memories we have with Ava have all been outside and to give that opportunity to Reagan, it was everything. -

[Kristen] We see some photos and we see video and it commonly gets the result of a little memory of certain things. Maybe she's too young for that, but I think any amount of photos and

video, like that's gonna be important to her. - [Diane] Just the time that she spent, I think those are gonna be the moment's that she's gonna treasure. (subtle music)

(giggling) (uplifting music) (uplifting music) (uplifting music) (uplifting music) - [Kristen] Being able to share those talents, being able to help anybody who's having a time and

adventure and they'll have a good video and some photos for them 'cause that's just so important. (uplifting music) Without her, they wouldn't be here, so it's just

kind of a piece of Ava. - [Dan] It'll be her legacy, it'll be what carries her memory forward. (uplifting music) (uplifting music) (uplifting music) (uplifting music) (uplifting

music) (uplifting music) (uplifting music)