Putting Max into his stander (2015/10/11)
ฝัง
- เผยแพร่เมื่อ 30 ก.ย. 2024
- Max has spinal muscular atrophy (SMA) type 1, a life-threatening genetic disease affecting motor neurons. www.maxstrength...
We made this video to show how we put Max into his stander. The fast motion is moving at about 4x real time. Including the pause we took to give him a CoughAssist, the process took about 15 minutes. His foot AFOs were already on.
I will light up a lamp for max whenever I go to temple.i pray lord shiva for max to come out of this pain.
He is absolutely adorable☺
Brave boy 😘😘
He doesn't deserve this and neither do you guys. Send max my HUGSSSSSSSSSSSSSSSSS.💜🙂
Una gran madre lucha x su hijo
such a great video!! I'm very interested to know about the thing she wrap Max hands we need that for Noah.
Sure thing! You make it by buying one of these (www.walmart.com/ip/Gold-s-Gym-Waist-Trimmer-Belt/26612953) and cutting it into the right shape. Instructions are here: facebook.com/groups/SMAadaptability/permalink/408140642684833/
Maria Ranson vx
ALLAH YAR VE YARDIMCINIZ OLSUN ABLAM
How old is him 😢
Love you Max, you're such a trooper!
Vela rehabilitation ewalkingfrsmesforsdults
Thank you for sharing this video with us. Best of luck to Max and parents!💞
jacco nouwen (28-12-1968)
Things should be made easyer for you since Max is not going to get smaller he will get bigger
A Hoyer Lift, Power Standing Wheelchair to be his stander , Regular Power Wheelchair for his
wheelchair and a Manual Wheelchair Backup Tilt and Space. Permobile make great SMA
Wheelchairs Standing and Normal Wheelchair. The Hoyer Lift To Save Your Backs., I Hope
You get help with electric bill since those machines must give you a $1000. a month bill
just running them then a extra $300. for the rest of the house. ABCD helps with electric
if you live in USA. Maybe calling a newsagency would help you fund raise, when they ask
for help people help since they only endorce truly sick people who need help. Some
places will build a special disabled person house for free, as media about that with the
Hoyer lifts and Celing Hoyer Lifts. I wish you the best. Your Great Parents.
Margaret Cabral next year
Oh my my so cute god bless u ❤️
Cool Video. So is SMD more severe than DMD? I have a friend whose son has DMD, and is now 30, but he could walk until about 8 she said.
There are multiple types of SMA. Max has type 1, which is generally diagnosed before 6 months of age due to a child's inability to lift their own head. The typical prognosis for SMA type 1entails inability to sit or hold one's head up unassisted, unable to eat by mouth, and in need of permanent ventilation, either invasive (trach) or non-invasive (face mask).
Max Strength that is quite interesting. So it only affects the spinal muscles then? From what my friend told me all three of her sons have and had DMD and it is quite a challenge. I wish you well though and hope Max lives a long happy life
> So it only affects the spinal muscles then?
SMA is a motor neuron disease which means all skeletal muscles are affected, including the muscles that control breathing, eating/chewing/talking, etc.
The amazing news is that last month the FDA approved Spinraza, the first-ever treatment for SMA. Children who are diagnosed genetically at birth with SMA (any type) can begin receiving Spinraza, which helps restore the protein missing in SMA, resulting in dramatically improved prognoses.
Max Strength ah that is great news hope it help him gain use of his muscles.
Amenerrasulû bi ma ûnzile ileyhi mir rabbihi vel mû’minun, kûllûn amene billahi ve melaiketihi ve kûtûbihi ve rusûlih, la nûferriku beyne ehadim mir rusûlih, ve kalu semi’na ve eta’na gufraneke rabbena ve ileykel masir (2/285)
La yûkellifûllahu nefsen illa vûs’aha, leha ma kesebet ve aleyha mektesebet, rabbena la tûahizna in nesina ev ahta’na, rabbena ve la tahmil aleyna isran kema hameltehu alellezine min kâblinâ, rabbena ve la tuhammilna ma la takate lena bih, va’fû anna, vağfir lena, verhamna, ente mevlane fensurna alel kavmil kafirin (2/286)
🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙌🙌🙌🙌🙌🙌🙌🙌🙌🙌
God bless this beautiful child. I hope Spinraza has brought hope and relief to your son. I remember watching a video of a guy called Shane who was seeing huge improvements after a very short time of being on the treatment. Good luck.
It won’t make him stronger. It stops ongoing muscle wasting, but does not return function to wasted, atrophied muscles.
@@LechLecha893 Yes I understand that thank you.
Ehh God protects baby max and the parents
Care givers are angels sent from heaven.
الا اله الا الله . 😚😚😚😚😚
What is the purpose of this?
❤️❤️❤️❤️❤️
Mientras otras los abandonan y los dejan con sus empleada o solo abandonados
God bless you his parents and Max. What a beautiful boy. Many prayers for you all!
What a beautiful boy.
how old is max
In this video, Max is two years old. He is now three, and still using the same stander is basically the same way. (We put him in it last night for 30 minutes or so.)
❤
Amén 🙏
😭😔😔😢
Amen
Does max still have that now
Yes! Max still uses a standing frame multiple times a week for health, therapy, and body positioning. He also still prefers the HeadPod for head support. Since this video was made, he has twice changed models of which standing frame he uses. You can see a picture of his current standing frame with HeadPod device on this page: www.maxstrength.org/maxs-setup.html (scroll down to "Orthotics/Assistive").
It still takes a similar level of effort to get him into the stander. (If anything, it's a bit trickier; he has grown a lot in six years!)
I'm team max all the way!!