Hi from a friend in S.W Ontario Canada. Damian certainly is a cutie. You are amazing💙 with Damian. It's fantastic how you are so "intuned" to Damian's communication cues.(Ie eye gaze, vocal sounds, facial expressions, body language etc.) I worked with children with Special Needs and their families, Watching your videos brings back many memories of the children I worked with. Take care and make sure that you get some breaks and supports.
Damien inspires me every day to keep on going to see how sick he is and also to see how strong he is I’m blind and also I have cerebral palsy no it’s nowhere near as severe as him. However he still makes me realize that so many people have it worse than me thank you for sharing Damien‘s life and just thank you for letting me know and letting the world know that happiness is possible to spite the negative turns in life. could you please do a video letting people know like what type of formula Damien uses and how you prepare it and also how you give Damien his medicine if he takes any I would really love to know that. thank you :-)
Thank you so much for this 💙💙💙 Damian has always had such a naturally positive attitude and it gives me so much strength! Your words mean the world to me, thank you. Love the suggestion for a future video!! I'll get to work on it! :)
That's exactly right, especially in his feet. When people don't walk or stand, the muscles tighten and they naturally will pull in like that. The same goes with hands/wrists (they will naturally go into a kind of "T-Rex" pulled-in position). We do a lot of stretching in therapy and at home as well as wearing ankle braces in order to counteract the stiffness and it helps a lot! 💙💙💙💙 Thank you!! 💙💙💙
Damian has a rare genetic disease called Acid Sphingomyelinase Deficiency (ASMD), which is a metabolic storage disorder. It causes a fatty lipid to store and build up in his cells instead of getting broken down. We’re fighting for lifesaving treatment right now 💙💙
