Please Save Damian
Please Save Damian
  • Видео 64
  • Просмотров 551 363
Hospitalized from Covid - 🤒 - rare disease vlog
Was not expecting this to be our next vlog, but that's how it goes sometimes 🤒
I was working on a new fundraising venture (art prints & more!) when Damian got super sick - I took him to the ER and it turned out he had Covid. We've been hospitalized from colds and RSV and things like that before, so it was no surprise when they said we needed to be admitted. I was so so grateful Damian could get all the specialty care he needed... especially since I got really sick too.
Even just watching helps our campaign, so whether you've happened across our video by chance or have been fighting with us on our journey - I am *so* grateful you are here. We are doing this.
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Просмотров: 32 902

Видео

how I made *MOVING* elephant parade floats! 🐘🐘 #studiovlog
Просмотров 5702 месяца назад
Our most ambitious parade float idea ever!! 🐘🐘 It took me a month to create a life-size mama and baby elephant for this year's 4th of July parade, but I am so happy with how they turned out! I found a lot of inspiration from elephant puppets used in theatrical productions like The Lion King and Circus 1903 - but if I wanted the full-size adult elephant to be controlled just by one person (thank...
Our FIRST big fundraiser of 2024!!!🎉🎉🎉
Просмотров 9654 месяца назад
WE DID IT!!!! Our first big fundraiser of 2024 was a success!!! A HUGE thank you to every single person who was involved in this 15 household yard sale and bake sale!! We've got a lot more big fundraisers coming up this year and I can't wait to share them as we go!! Let's do this!! 💙ABOUT DAMIAN💙 Damian is fighting a terminal genetic disease called ASMD/Niemann-Pick Disease Type A (sometimes re...
How to change a G-Tube Button 💙 Feeding Tube Life
Просмотров 6 тыс.4 месяца назад
Damian has been using his G-Tube for a little over a year now and with Damian's weakening muscles (including the muscles we use to swallow food), we have now become completely reliant on his G-Tube for Damian's nutrition. I'm SO GRATEFUL we live in a time where having a feeding tube is an option. I could go on and on about the benefits we've gotten from his G-Tube, but this video is mainly focu...
How much our terminal illness COSTS ⬅️
Просмотров 1,9 тыс.5 месяцев назад
If I wasn't me but watching me... I'd be curious to know how much our situation costs us in a financial sense. As it's tax season, I just finished itemizing all the costs, so in the spirit of transparency, here is what we paid for out-of-pocket over the past two years! Curious to know if this is MORE or LESS than you anticipated? Let me know in the comments! (And if you have any questions, feel...
💉 INFUSION DAY VLOG 💉 Our Rare Disease Life
Просмотров 9 тыс.6 месяцев назад
Come with us on INFUSION DAY! Every other week we spend the day at Children's Hospital so that Damian can get infused with a drug that helps fight ASMD in Damian's liver, spleen, lungs, and more (pretty much everywhere but his brain). There was a lot of drama and a lot of fighting to get him on this drug in the first place, and I'm so SO GRATEFUL we are able to do this because in the past year ...
Our FIRST GALA & our BIG surprise on an Arizona freeway!
Просмотров 1,2 тыс.9 месяцев назад
Just before the holidays, Brock, Damian, and I went to Arizona to attend our first gala for the Wylder Nation Foundation (the non-profit developing Damian's treatment!). Keep watching until the end to see our BIG surprise! To learn more about the Wylder Nation Foundation or to donate to them directly, visit their website at wyldernation.org/ To learn more about Jillian's two children with ASMD,...
Walk through our NOT-So-Haunted House!!
Просмотров 1,7 тыс.11 месяцев назад
WE DID IT!!! Our most ambitious fundraiser yet was a huge success!!! We have been working since August on Damian's Not-So-Haunted House - this reveal video has been a long time coming! I just crunched the numbers this week and WOW I can't believe we actually *exceeded* my lofty fundraising goal for this event!!! I'm working on a blog post now with all the details - check out SaveDamian.com/Blog...
Going to the Santa Barbara Zoo! ((It's Damian's BIRTHDAY!))
Просмотров 2,5 тыс.Год назад
Going to the Santa Barbara Zoo! ((It's Damian's BIRTHDAY!))
Damian's G-Tube Surgery (& our hospital life!)
Просмотров 36 тыс.Год назад
Damian's G-Tube Surgery (& our hospital life!)
New parade, Mickey, & more at Disney100 Celebration!!
Просмотров 2,4 тыс.Год назад
New parade, Mickey, & more at Disney100 Celebration!!
Do I look like Taylor Swift?? // We are never ever getting back together (Taylor's Version)
Просмотров 2,7 тыс.Год назад
Do I look like Taylor Swift?? // We are never ever getting back together (Taylor's Version)
9 MONTHS on the experimental drug!!! What's better, what's worse
Просмотров 24 тыс.Год назад
9 MONTHS on the experimental drug!!! What's better, what's worse
Our last time on SPLASH MOUNTAIN... ever!!!
Просмотров 165Год назад
Our last time on SPLASH MOUNTAIN... ever!!!
My 3-yr-old picks out his FIRST stocking!
Просмотров 6 тыс.Год назад
My 3-yr-old picks out his FIRST stocking!
Starting the 2nd of three life-saving treatments for ASMD!!!
Просмотров 30 тыс.Год назад
Starting the 2nd of three life-saving treatments for ASMD!!!
Surprising Damian after his hospital visit with a night at DISNEYLAND!
Просмотров 3,7 тыс.Год назад
Surprising Damian after his hospital visit with a night at DISNEYLAND!
DIY Bats & Ghost garland - SO fun to do with your littles!
Просмотров 894Год назад
DIY Bats & Ghost garland - SO fun to do with your littles!
DIY Pumpkin garland - Halloween crafts to make with your kids!
Просмотров 1,3 тыс.Год назад
DIY Pumpkin garland - Halloween crafts to make with your kids!
Teaching my sister how to care for my son with a genetic disease
Просмотров 25 тыс.2 года назад
Teaching my sister how to care for my son with a genetic disease
3 MONTHS on the experimental drug & we're starting PHASE 2!! Damian IS getting stronger!!
Просмотров 8 тыс.2 года назад
3 MONTHS on the experimental drug & we're starting PHASE 2!! Damian IS getting stronger!!
Damian was in the Santa Clarita PARADE!!! (and we even made a float!)
Просмотров 2,1 тыс.2 года назад
Damian was in the Santa Clarita PARADE!!! (and we even made a float!)
My terminally-ill toddler went to his first wedding!
Просмотров 3,9 тыс.2 года назад
My terminally-ill toddler went to his first wedding!
My toddler did a sleep study - SPOILER... we got no sleep
Просмотров 8 тыс.2 года назад
My toddler did a sleep study - SPOILER... we got no sleep
Damian has been on the experimental drug for 1 MONTH!!! IS IT WORKING???
Просмотров 4,9 тыс.2 года назад
Damian has been on the experimental drug for 1 MONTH!!! IS IT WORKING???
My baby Damian, BEFORE the diagnosis
Просмотров 156 тыс.2 года назад
My baby Damian, BEFORE the diagnosis
WOW, my baby can actually STAND with this!!!
Просмотров 9 тыс.2 года назад
WOW, my baby can actually STAND with this!!!
Damian's FIRST DOSE of (potentially) life-saving treatment!!!
Просмотров 8 тыс.2 года назад
Damian's FIRST DOSE of (potentially) life-saving treatment!!!
BIG BIG NEWS FROM THIS MORNING!!!!!!!
Просмотров 7 тыс.2 года назад
BIG BIG NEWS FROM THIS MORNING!!!!!!!
We FINALLY got a new stroller! And... it has a leash???
Просмотров 6 тыс.2 года назад
We FINALLY got a new stroller! And... it has a leash???