9 MONTHS on the experimental drug!!! What's better, what's worse
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- Опубликовано: 28 авг 2024
- BLOG POST: www.savedamian...
Here is our 9-MONTH REPORT!
As of January 22, 2023, Damian has been on the experimental treatment intended to stop his brain deterioration for 9 months! Unfortunately, Damian has been sick for much of the past 6 months - that, and his growing liver and spleen, have caused a lot of issues that I believe has stunted his progress, and in some areas even made him weaker. Overall, however, we're making progress and in the last month we took a huge leap forward by starting Enzyme Replacement Therapy, the 2nd treatment he needs (FINALLY!!!)
The blog post linked above correlates with this video, as there are some notes I've made that didn't really work in video format. THANK YOU ALL FOR BEING HERE, for cheering us on, and for continuing to help us raise the funds needed quickly for the FINAL TREATMENT!!! 💙
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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 do WHATEVER IT TAKES to expedite the development of treatment and save his life. Please help us #SaveDamian by sharing his story!!! We are SO CLOSE to finally defeating ASMD, for Damian and every child given this death sentence. Thank you 💙
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💙 LINKS 💙
GoFundMe: gofund.me/24dc...
Blog and More: www.SaveDamian...
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💙 AS SEEN IN THIS VIDEO 💙
Tinukim iFeed Self-Feeding Bottle: amzn.to/3ukTkCp
Links to the toys can be found in our Amazon Storefront: www.amazon.com...
I pray a hedge around you both. I speak life over this child. I speak healing over him. All things are possible with God. To the mom, this is your mountain and we have just enough faith the size of a mistard seed we can move it. To any other brothers and sisters in Christ, whom see this, i ask that you please stand in for this child and pray healing and life over him.
We speak life in Jesus name!
Yes Ma'am! We're praying for healing
and life for Damian 💙
Amen ❤
Amen❤❤praying tonight and every night for Damian
God cover Damian in you healing power I pray you give this family a miracle I believe God you are already healing him I pray this In Jesus name God bless
Damian is very lucky to have such a patient and wonderful mom. I know it must be tough on Damian losing the abilities he once had... he's a fighter.
You are the BEST Mama and caregiver. I understand from being a mother myself, the intense unconditional love you have for him, and I know I would be advocating the same way you are. Damien is such a beautiful boy, and so extremely blessed to have you for his mama. May God give you strength on this journey, and healing for your baby❤
Heartbreaking and joyful at the same time. He has been blessed with the most amazing parents.
With how thin he has gotten, has the Dr mentioned a g-tube? It was so hard to surrender to that with our son, but honestly it was the best thing we could have done. My prayers are with your precious family
What a sweet boy!!! Your video happened to pop up today while I was watching my regular videos and so I subbed to hopefully help you out. I've now watched a few of your other videos to learn about Damien and his diagnosis. You are an amazing mom to this gorgeous little boy and I love the connection between you two. Now I'm eager to come along on his (and your) journey. I'm a mother to four boys (all grown now) and a Nana to a granddaughter and a grandson.
My favorite is how excited he gets and how proud of himself he is! Way to go Damian!!
Yes!! That's my favorite part too! Thank you! 💙💙
I loved all Damien videos! Can’t wait to see more progress! God bless you!🙏🙏🥰👏👏
You are such incredible parents. I hope there is a life saving treatment for your beautiful son. Keep fighting.
Looking forward to more improvements for Damian.
You are an amazing and patient mom🦋🦋🦋🦋🦋🦋 No blue hearts on my device, but I think butterflies signify hope
Way to go buddy ... and what a wonderful and beautiful mother ....
Wow Damian, you are doing an amazing job. I love watching you progress, your smile says it all when you know you have done it. A wonderful mummy like yours says it all. A definite improvement, keep going both of you. ❤
Go Damian! I love his little voice, so sweet.
He is the happiest boy even through all his hard work! Keep fighting!
He really is! It makes everything so much more worth it to see that he is proud of himself too! 💙💙💙
You are the greatest mother! I can imagine how hard it is. As a mother of 2 toddlers, I just can’t be that patient. Keep going, Damian❤!
What about a collar, almost like a cervical collar but soft and padded to the touch, with a firm core for the support of his head ? It would need to be fitted/tailored especially for Damian. When he’s doing his puzzles and
the motor skills, 4:32 , if you used it then, you would have two hands to help him with it. 💜
Thank you so much for your suggestion! I talked to Damian's physical therapist about this today and she and I picked one out to try! It should be arriving soon! 💙💙💙
@@pleasesavedamian I’m so glad you’re trying this! Hopefully it helps and will help him get less tired from play as well hopefully
@@pleasesavedamian I’m so pleased to hear my suggestion might help this wee soul. Sometimes people ‘looking in’ from a
distance, can see things that Mums and Dads are too close to see. I live in Australia 🦘and you can’t get much more distant than that. 🐨. Happy to help 💜
So many comments are about Damien's excitement throughout this... Which is heartwarming so don't think I'm being mean. He gets his excitement from his parents and how patient and kind and oh so loving they are with him. ❤️😭
He so dang cute, sending hugs and prayers for you baby boy.
So many things going on, he's working so hard!
He is, thank you so much!! I'm so looking forward to progressing with his ERT infusions, I think that's gonna make a big impact on him! 💙
God bless this little guy
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Little brave boy ALLAH blessed him always be happy love you 💞
Love from my side little champion 😇🥰
Praying for your sweet boy and for your a wonderful mother . God only gives special kids to special parents!
Damian is always working so hard!!! Go Damian!!!!
Hardest worker I know!! 💙💙💙
An improvement is good it was great to see how happy he got when he could pull the pigs out from the toy and also how well he could position himself to pull the rings off the tower and use all the other toys
Yes! It's so fun to see him so happy and proud of himself - he knows he's doing really impressive things! 💙💙
Hi
I didn't know this illness. 😢 Your boy is so strong. He is trying his best ❤️ he is so lovely 🌹 you and your family are doing well 💕
Congratulations little man ur hard work is paying off! I love hearing you talk more keep up all the good work!
Go Damian!! What a champ :)
Thank you!! Yes, he's such a hard worker!! 💙💙
Yay Damian! ❤️
Thank you!! 💙💙
You are the greatest mother , you are the real face of motherhood ♥️dnt worry stay strong in sha Allah he will well soon. Ameen
He’s gotten so big!! Good job Damian!
He's getting taller every day & every 1/4 inch is a blessing!! Thank you!! 💙
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Dear Damien, you and your family are in my prayers..May God place his Holy Healing hands over Damian and cure him.....❤️
How is Damian today?
His chewing will get better! Mince use too be rough. But I can’t eat mostly anything except steak and sandwiches.
Does he have a therapeutic stroller? Seems like he needs more/better support in sitting in order to use his arms. Have you tried using his bath seat to do activities?
I may have missed something in a video, what was the symptom that made you aware something may have been not going as it should with him prior to the initial diagnosis?
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The corny background music is not needed--Hard to hear what you are saying
You could be more respectful!
Speaking of things that aren’t needed - insensitive comments about ‘corny’ background music aren’t required either.
I can barely hear what mom is saying and I want to know what she was saying.xx
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Don't know about Damian of course, but my kids would always get chubby before a growth spurt caused them to become taller and skinnier.
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? Have doctors ever mentioned maybe Botox I watch a RUclips channel called the house of Hughes there a little boy has several palsy and helps with tightness, gives me more flexibility
Dr. Ken Berry
You are prolonging his suffering. He will never get better. What will happen to him if something happens to his parents?
Sorry but are you a doctor? At 11 months of age I was told my son will never walk talk or go to the toilet on his own .he is 38 has the most beautiful little 9 year old daughter a wonderful wife ,jobs your comment is just horrible you really need to think about things you say .well done mamma Damian Daddy your all working so hard.❤
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