Ava's Make-A-Wish Story | Tay-Sachs Disease

[Music] 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 [Music] my goal is to make sure reagan won't have to say the same thing [Music] [Music] we had a lot of things in common we both like to hike we both like to be outside our first date was going out on a hike on that first date we talked about core values and a lot of stuff aligned as you get older you know what's important and what matters and what you want in someone [Music] [Applause] [Music] i was ready and that's something i've always wanted i just didn't know if dan was ready [Music] four pounds 15.4 ounces she's itty bitty [Music] you know her you love her [Music] okay [Music] oh my goodness [Music] not only kristen and i being able to continue that but now bringing in ava we took her all over creation thank you you've been you ready for adventure [Music] [Applause] [Music] [Music] my favorite memories was took the days off and we hiked and we had this beautiful sunny gorgeous day that was two to three months before her actual diagnosis although we knew something was up it was before things really hit us [Music] at the one year checkup the doctor said i don't want to alarm you but i'm very concerned [Music] 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 [Music] china [Music] go even go go [Music] i thought it would maybe come home with some glasses for ava you know this cute rubbery ones that stay on her face and we got pretty much like the worst thing you could get at any appointment ever with your kid it was an eye doctor saw something and the look on her face the optometrist had discovered little cherry red dots in the back of her eyes she said she had seen it one other time in her life and most eye doctors never see it 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 [Music] [Music] there she [Music] [Music] [Music] at one of ava's appointments before she was two we had talked to the neurologist and he 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 well i'm not gonna even think about that it's just too tough 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 as ava grew and the disabilities became harder harder to manage that's become more of a challenge for us [Music] she's susceptible to getting sick so even the common cold can be really tough on avec 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 um you just do like simply put in any parent would do what you had to do or what you could for your kid so you just you do you don't give them a choice [Music] taysacs 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 percent [Music] [Laughter] [Music] [Music] so strong [Music] i don't know if she'll ever realize like how important she is [Music] ava's pediatrician came by and she said we're given the kids we need that i don't think that could be any more true for reagan in the midst of everything we're doing with ava reagan's just happy and easy and that's exactly what we need i 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 [Music] so as soon as we brought right home she's just wailing the naval lights up like this biggest smile like i don't know what else could make even that happy [Music] [Music] [Music] [Music] [Music] make a wish got a hold of us you know he was eligible what would you guys like to do it was hard to figure out what can we do with the 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 times ava had been there once before and we just thought that would be a great place for ava [Music] so we're looking at what can we do in alaska with ava to make new memories and just enjoy time with her the redfields like to camp and you know ava likes being outside she likes to feel the sun on her face being that alaska so spread out day trips with ava are just not practical do you feel so pretty every day 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 [Music] [Applause] [Music] [Applause] i'm sure her wish would have been just more family fun and playing with her sister [Music] great alaskan holidays and make a wish foundation have worked together in the past oh my gosh it's so pretty we came up together with the idea of doing a travel trailer [Music] so her and i were in tears actually when we saw it as long as i've been there i've never seen that kind of a wish 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 more so even in 2020 than ever before it's very important for us to give back [Music] congratulations [Applause] [Music] 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 [Music] i imagine camping for anybody with kids takes a lot of time and effort especially with ava you know she travels like a rock star 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 [Music] [Music] [Music] and just like that [Music] [Music] it's a good kind of starter place you know we don't have to go very far there's 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 my hope was just to 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 day in the camper say hi help my sister [Music] most people they look at avon they just see you know maybe one two expressions because we know what eva was you know when she was six months and nine months and when she was still like at 18 months we see those things yeah are you talking [Music] okay [Music] really they're still there they're just so faint but they've never really disappeared can mommy come in here [Music] [Music] well this summer's 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 we've got to see her develop being able to share the camping the trailer and going places that i've never been before and living in alaska for many years this has been been a great experience for me just as well you get really appreciative of seeing a handicapped sign those become like little gems of places because we can go there as a family [Music] two things that never leave her side is her suction machine and her feeding pump her food was never pick up with two fingers eat a cheerio type no laughing until you eat it okay it started to really slow down and her purees were coming back out of her mouth we got advised to do a swallow study what we found is that she was aspirating 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 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 [Music] the first summer together spent some time kind of exploring north 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 [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 [Applause] they sought vengeance we were honestly looking for every little crack crevice how they were coming in [Music] we were shutting windows that even had screens on them [Music] [Applause] it was war last night kind of surprised we made it out of here live it started like at midnight like i killed a couple and 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 it's not funny i'm sorry no that's okay i think we're gonna not stay the night 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 [Music] [Music] so [Music] me [Music] 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 go go ava go inside hey [Music] is [Music] 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 a 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 there's usually not a whole lot of sleep when when you sleep with her hey hmm [Music] [Applause] [Music] [Music] that's the laugh i remember [Music] yeah go go go go go [Music] oh you got a little bit more behind the spot right here around the cushion did you get that on video i did [Music] those are precious memories we're going to want to keep i see we get a fire started soon [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 [Music] we got a site that we were eyeballing it's got a view of the glacier it's a pull through site so even though dan now knows how to back up really well it should be a good quick pull-in setup set up camp [Music] god [Music] you know we have pictures for days of ava and her hiking pack going all over the place [Music] now reagan is old enough and she has enough muscle control that it's time to put her in the same pack ava had get some movement going some fresh air we don't have the best with this so any kind of movement she really liked it she started to track things it was a totally new experience for her [Music] at willow wall they have a great boardwalk area [Music] for ava's wheelchair it's hard to beat that you know it offers that vibration and that just helps to clear her lungs out [Music] because she's not as mobile as most other kids are she gets a lot of build up in her lungs so we have to twice a day make sure that she gets her respiratory treatments [Music] 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 [Music] so crystal what are we doing today photos family photos wedding family photos minus the wedding so explain the situation for me it's 20 20. [Music] ava rose [Music] is that so fun hey [Music] you can't really have a wedding during a pandemic with ava and when all your family lives out of state we cancelled everything except for the photographer those were some of the most important parts of the wedding would have been [Music] so [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 [Music] sudden the trailer almost slid right into my truck i mean it was like a foot away from it it ended up stopping but that's my lesson for today is chocolate tires it could have been so much worse 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 covid19 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 you sitting up all strong cakey this is kind of our first time being a parent again so all these things are just amplified [Music] 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 [Music] kristen and i have been parents for three and a half years and we never saw a crawl [Music] [Music] so i think gentle is probably reagan's first word anytime she's near you but you know gentle uh did you just give her a kiss you give her a kiss oh that's keith that's a little more of a headbutt [Music] ava we're packed up is that a smile i see his mario get your food on section everything we need ava do you have anything you want to say hi do you have anything you want to say i'll take a cute smile that's perfect i love you yeah okay is that what you think you had fun huh [Music] [Music] my favorite spot is probably the quartz 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 [Music] okay [Music] 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 she's a seventh affected child to have it so it's been passed down from child to child to child and when she outgrows it then it'll be passed off to the next kid who knew the glorified bean bag would go so many places for a special occasion francis birthday fancy's birthday ava sing happy to you happy birthday to you happy birthday dear fancy happy birthday to you our world would be i think a lot tougher without friends [Music] it's kind of like our kind of our rock and this mist of tay sachs craziness yeah [Music] [Music] originally when our optometrist diagnosed ava she said i noticed something and the last time i saw this was about 20 years ago she had diagnosed a little girl named emily [Music] 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 [Music] so that includes finger rubs for the night includes finger buds and massages right in walks outside [Music] so with tay sachs disease most of the children cannot 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 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 jejunum and then the g-tube is there just to vent the excess gas and liquids [Music] 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 had no idea why [Music] 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 [Music] you know we didn't know what was going on but she wasn't looking good and things were just not right [Music] uh [Music] [Music] it was kind of like pulling teeth trying to get like an answer get going in the right direction it's just hard when ava doesn't talk [Music] [Music] because you know ava's ava little things become big things very quickly [Music] 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 always post a picture but i don't have many pictures from around that time i want to make sure that reagan has plenty of pictures plenty of video plenty of memories that she can look back on and not be limited [Music] she had a large obstruction in her bowels prohibiting anything from moving down so it was just coming up she was severely dehydrated she had a uti ava was that a lot of shaky shaker for the big night [Music] day five yeah she finally cracked a smile and you could tell like okay the antibiotics are kicking in she's rehydrated she's got her food things are moving anything you want to say right now he said get me out of here [Music] oh [Music] [Music] so [Music] [Music] it's a lot of work i mean caring for ava's a lot of work especially these 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 know we weren't in the house we're on a trail or we were doing something new as a family the work doesn't weigh on you later as so much as possible regret [Music] it's meant a lot to kristin having the ability to get out and go camping and spending time with the family i think has been very special for her sitting around the campfire and just warming up and having a s'mores and hot dogs it's just it's it's my favorite just being together as a family [Music] 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 steward has some gorgeous hikes and this is definitely a top one hey it's nice to be able to spend a little bit of time with kristin again and kind of reconnect with some of those things that we have passions for [Music] it was definitely something that i'd been wanting to do and i'm glad that dan also felt the same way [Music] so this is the place that we started off at willow wall and this is our second to the last spot and hi how's it going the blue jay literally just landed right on the camera oh and then it took a freaking turd 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 [Music] i definitely think we've evolved faster we've had to address harder issues most parents don't face the terminal illness of their child not makes or breaks you but it definitely um puts some strain and it forces you to go in a direction and so thankfully dana and i have gone in the same direction and you know we both love ava and love being parents to ourselves [Music] [Applause] [Music] [Music] where we're at today is a state campground by denali and i'm not going to give out the names of it because it's a wonderful place and we just discovered it okay [Music] i'm fairly spiritual so i think she is my little angel she was given to us we didn't know we needed her i think most could start like that you know [Music] without her being who she is our lives would be a lot less sound would not be as rich [Music] hey guys you'd have smiles are you [Music] 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 it was really exciting to see the whole process it was my first mission to see that take place was really amazing you always remember your very first one and every one of them there's something special that you take out of that you know it's a beautiful state out there why not help as many folks out like the red fields as we possibly can because everybody deserves to adventure [Music] [Applause] [Music] 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 you see some photos and you see video and kind of maybe it spurs a little bit of memory of certain things maybe she's too young for that but i think any amount of photos and video like that's going to be important to her just the time that she spent i think those are going to be the moments that she's going to treasure [Music] hmm [Music] good job so we can kind of share this talents if we can help anybody just have a good time and adventure and then you know have a good video and some photos to go with it because that's just so important oh look at us [Music] without her they wouldn't be here so it's just kind of a piece of aiden it'll be her legacy it'll be what carries her memory [Music] she forward so [Music] [Applause] [Music] [Music] [Music] [Applause] [Music] so [Applause] [Music] you

Channel: Adventure for Ava

Views: 29,098

Keywords: make a wish, make a wish story, kids make a wish, tay sachs, tay sachs disease, make-a-wish, wish kid, make a wish film, kids with tay sachs, tay, sachs, tay-sachs, make, wish, kids with fatal diseases, rare disease, fatal disease, kids with rare diseases, film about make a wish

Id: QTKo7Li2Gv0

Length: 56min 46sec (3406 seconds)

Published: Fri Jun 24 2022