💉 INFUSION DAY VLOG 💉 Our Rare Disease Life
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- Опубликовано: 29 авг 2024
- 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 we have seen so much improvement in terms of his liver size and health, his ability to eat more, and his growth!
Hope you appreciate this little look into our lives! Thank you so much for being here!!
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💙ABOUT DAMIAN💙
Damian is fighting a terminal genetic disease called ASMD/Niemann-Pick Disease Type A (sometimes referred to as "Baby Alzheimer's") and we're determined to raise the $3 million needed to expedite the development of treatment and save his life. Please help us #SaveDamian by sharing his story and considering a small donation! We are SO CLOSE to finally defeating ASMD, for Damian and every child given this death sentence. Thank you 💙
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💙 PLEASE HELP 💙
GoFundMe: gofund.me/24dc...
Blog & More: www.SaveDamian...
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💙 AS SEEN IN THIS VIDEO 💙
NEW! SaveDamian Car Magnet! www.savedamian...
Stacking Rings Toy: amzn.to/44WHzSq
Counting Koala Toy: amzn.to/3PxmibT
He always does so well with his infusions. I can tell he was sad at the end cause he was missing his dad.
He always brightens up when Daddy comes home 💙💙
This little man is a trooper and a true hero
He really is!! Thank you JJ!
Damien is so sweet and I have been praying for y'all!
Have you considered meeting with a CPST at the hospital? Damien will probably outgrow conventional car seats as fast as he is growing and they can help fit adaptive seats that might work better for his low tone. I am a former CPST and learned those head straps can cause issues but I know you struggle to keep his head in position, so you have to play the pros and cons game which is never easy! A CPST who has experience with special needs might be able to help you figure out the most comfortable and safe options.
I am so impressed by you and all the things you manage to get done while also advocating for that sweet boy! Keep going!
Oh, thank you so much for this advice!! Damian's been having a lot of growth spurts lately, (YAY) and we've been in conversation with his therapists about other car seat options. I haven't talked to anyone at the hospital though - you're right they must have someone who has experience sourcing seats for kids with low muscle tone. Thank you again, we'll keep you updated!! 💙💙💙
Damian looked so happy when you woke him up - I NEVER look that happy to wake up 🤣
He's seriously such a little trooper though :)
Haha! Damian usually gives the sweetest smiles when I wake him up! I don't know how he does it!! 💙
You are a remarkable woman and the best mother I have ever seen.
Oh my goodness, you are very kind! Thank you so much 💙💙
I’m sure this is a long day for both you and Damian, but thank God there is a treatment that is helping your precious boy. God Bless you and your family.
Oh my goodness, to think just a few years ago this treatment didn't exist at all - I am SO grateful 🙏🙏
I am so happy to see this gorgeous boy again, I missed seeing Damian a lot. I hope he is doing well. All the very best from England. xxx.
Oh thank you so much, this means a lot!! 💙
He is such a brave little guy
Thank you! Yes he is!!
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How old is Damian
He will be 5 in May 💙
I just got my infution today
Soo Cute can Damian walk