You should do an update, now that Spinraza is on the market.

*Zolgensma was just approved by the FDA but for children under 2 years old and t's very expensive*

This breaks my heart so much because my granddaughter has SMA 😥

@fatimasalman8921

9 ай бұрын

How is your granddaughter now?

My cousin has the same problem and i do hope for the cure to be found soon

Government should subsidize to lower the cost of expensive drugs. There are so many people living with various types of SMA.

If Stephen Clark reads the comments, I prayed for your Granddaughter's healing.

She's adorable.

Probiotic implant or facel implant from her family members could do miracle her body can produce muscle something wrong with her digestive system or her whole gut issue my prayer to this little angel

What is the progress with the trial that the little boy Jay?? I live in Vancouver British Columbia canada, and every time the firefighters go to the local Walmart I always donate to this disease. I am a poor woman but the way I look at things is if I have the means to help than I will always help out in whichever way possible. And this disease is the one that I donate the most to so I thank you for sharing the story , and my prayers go out to both of the little ones in this episode and of course to all the other children & their families in the world that is suffering this horrific disease 🙏💕

I pray a cure is here soon!

@junbh2

3 жыл бұрын

There are a couple of really powerful treatments now that can pretty much cure it if started early enough, before symptoms start. Once there are already symptoms they may be able to stop them getting worse.

@allisonbrower5847

Жыл бұрын

@@junbh2 SMA breakthroughs in recent years have been absolutely astounding

My sister had Werdig Hoffmanns and died at 8.5 months old in 1982. Had some genetic testing done and I'm a carrier of the gene.

She's adorable

Gorgeous granddad! How are Scarlett and Jace doing today? Couple of drugs have shown promise....

My baby also in same condition, She Just 9 months old

@fatimasalman8921

9 ай бұрын

How is your baby now?

How is she now ❤❤❤

Hi i am syed zamir Hasan from pakistn My son name is abdur raheem age 10 years he smn1 paitient pls advise me how to treatment

Like, even though their motor neurons (and stemming from that, their muscles) are hosed, we can all maintain a faint (but hopefully brightening) glimmer of hope that some day developments in medicine and engineering will yield a means to restore movement for the grievously afflicted. Until then, so sad, babes!

@richardred4396

7 жыл бұрын

pantyflash has been found, treatment via genemodification

I have SMA too!😋

@geekdivaherself

7 жыл бұрын

Did you see this? This looks hopeful: www.newscientist.com/article/mg23230943-300-children-with-fatal-muscle-disease-walk-after-drug-breakthrough

@lissythemenace5580

6 жыл бұрын

Sameee

Saya Rita dari indonesia. Juga mengalami sma. Saya ingin sekali mendapat tindakan medis. Please help me..

Hello sir my daughter is a SMA peshent of there is any treatment available

@mixmaxchannel4121

3 жыл бұрын

Zolgensma which has a reported list price of £1.79 million( ₹18 crore) per dose is labelled the most expensive drug in the world. Zolgensma was approved by the NHS England on Monday to treat babies with a rare fatal genetic disorder. Zolgensma, a life-saving drug, can enable mobility in babies and young children suffering from a rare genetic condition. Zolgensma is an adeno-associated virus vector-based gene therapy indicated for the treatment of pediatric patient less than 2 years of age with spinal muscular atrophy (SMA).

@mixmaxchannel4121

3 жыл бұрын

Zolgensma which has a reported list price of £1.79 million( ₹18 crore) per dose is labelled the most expensive drug in the world. Zolgensma was approved by the NHS England on Monday to treat babies with a rare fatal genetic disorder. Zolgensma, a life-saving drug, can enable mobility in babies and young children suffering from a rare genetic condition. Zolgensma is an adeno-associated virus vector-based gene therapy indicated for the treatment of pediatric patient less than 2 years of age with spinal muscular atrophy (SMA).

ice bucket challenge

As a child with SMA grows their bodies are doubly stressed, first by the decrease in motor neurons and then by the increased demands on the nerve and muscle cells as their bodies grow larger. The resulting muscle atrophy can cause weakness and bone and spinal deformities that may lead to further loss of function, as well as additional compromise of the respiratory (breathing) system. Currently, there is no cure for SMA. However, there are treatments available to help manage symptoms, reduce discomfort, and maintain quality of life for as long as possible. Ayurvedic molecules and disease-modifying Panch Karma treatment developed by AMDS India are promising.

@yuvi31

3 жыл бұрын

Hi Sir, my sisters daughter diagnosed with SMA type 2 just few days back. she is 2 years 6 months old, she can sit but can't walk. Can you please give more info about the Ayurveda treatment and where it is performed. My number is 9940118948, any information will help in a great way. Thanks

My Little child is death in spinal muscular atrophy type 1 and my first son is suffer with spinal muscular atrophy type 2 now his long life chances is so harmful everyday he is need to life support can anybody help me and save my child life everyday I am lost my money for her treatment now I am loser please anybody can help me I am from Bangladesh.

@fatimasalman8921

9 ай бұрын

How is your baby now?

আমি বাংলাদেশি আমার তিনটি বাচ্চা ছিল sma তারা মারা গেছে

There is a cure and it's called Spinraza!

@laurengarvin6644

6 жыл бұрын

I have sma and that’s not a cure

@jonnas4174

5 жыл бұрын

Sanam Lakhani thankfully we have a treatment. Still waiting for a cure

CBD oil might help. Worth a try. Not psychoactive and no negative side effects.

@Tamoor009Vlog

5 жыл бұрын

My dieter ellos no abel to walk she have a smn exon 7 exon 8 gene are deceted

I pray pray for stemcells for the little girl