I am Indian from Kerala. Ayurveda show great results in Manegmant of SMA. Dr Roshni Anirudhan treat me and save me from death. If you search as roshini anirudhan in TH-cam or Google you can see her interviews etc. If you see me please open this site:english.mathrubhumi.com/news/offbeat/read-the-story-of-poojit-who-lies-on-his-desk-in-classroom-and-studies-kerala-1.3641513
When I saw baby Josephine who passed away due to SMA type one, it made me tear up because my sister also has the same condition. They gave her six months to live and now she is 8. I just want to thank the Lord for the miracle put on her. She already has been taking spinraza for 1 1/2 years but the progress is not as quick. I was reading online about zolgasma and it said it could be administered to children under the age of 2. I really hope that there will be amendments in the future so that she can recieve the one time treatment as well. Rest easy baby Josephine, we all love you!!
I lost my 2 brother when they were 27 yrs and 14 yrsold, he was sma type 1,he was very intelligent and smart I love him so much, I can't hold my tears up
Please donate do Emilly! A Brazilian little baby with less than 1 month to be able to take the Zolgensma. This remedy it's her chance to have a better life: vaka.me/864787 This is her story th-cam.com/video/AIKfB2oBLwI/w-d-xo.html vaka.me/864787 vaka.me/864787 vaka.me/864787 vaka.me/864787 PLEASE, HELP US!
Our baby is 4 weeks old and just got the Zolgensma Gen therapy in The Netherlands. She has no sympthoms yet she moves like a “normal” baby. We just need to wait now till the grows up to see is her body is producing enough SM1 & SM2 Gen to move like normal kids. We just goinna hooe for the best❤
I cried after watching the video. Im a home healthcare nurse and care for a beautiful 9 year old little girl with Type 1, and understand how expensive the gene therapy, but wish all regardless of age could receive it in hope some improvement or at least stop the progression. This child is so smart, so eager to learn and socialize. Vent dependent, but keeping her active and muscles strong. Spinraza quarterly. Praying for miracles- so fortunate for Evelyn and all who qualify for this amazing genetic infusion. Since it works by infusing the missing gene into cells, it looks to reason it would do the same for anyone at any age, even if better outcomes for the very young. Staying hopeful. G~d bless and thank goodness for these amazing scientiests and physicians.
I think everyone should get it as looking at this little girl the change is huge. If there is a medication that is this life chancing it shouldnt be about money but about humanity and human rights, now these people will get the chance to live a life almost like everyone else if given as fast as possible. As they wont need carers and will be able to work that will reduce some of the cost too. That type is or was terminal, it's absolutely amazing to see the difference in the little girl.
Such a great story. I am very happy to see all the progress that is going on with this horrible disease. I lost my sweet boy to SMA 1 in 1995, he was 10 months. Back then there was nothing Dr.s could do but issue a DNR and refer us to hospice. I miss him each and every day.
As a mother who has lost infants due to unrecognized treatable complications, and as a doctor who works in this field, my condolences. I know it can take years to return to the “new” normal. Thank God for those who worked for these new treatments.
Jane Delp I’m so very sorry for the loss of your son. A school friend in my sisters year had Sma and passed away at the end of 1994. We are still totally devastated by her passing. How I wish Spinraza could have been available back then. Xx
such an inspiring story.....i strongly pray that one day all the children and the individuals suffering with SMA does get this treatment at their reach...
I hope my baby can be this healthy I’m so scared he’s only a week old can y’all please keep me and my baby in y’all prayers. Things like this give me so much hope for my son. I hope everyone’s baby is fine and doing fantastic
Hi, how is your son doing? He sounds like he’s the same age as my son who also has SMA. I hope all is well. Please reach out to me if you have any questions or just a listening ear :)
I lost my 2 baby sisters when they were almost 2 years old.. after their passing away my parents didn’t want to risk having another child and now I’m an only child and they’re too old now to have more kids.. I feel so sad I wish back then there would be this medicine, I would’ve had a bigger family and a happier life
I pray for baby Shams to complete her medicine cost asap. Last months been crazy for us.. we've been trying to raise funds to save her before it's too late 💔 51% done and 49% left to go. We only have 3 months left. 😢
I am a post graduate intern from the Philippines and I handled patient with this kind of disease. He was admitted on our institution for almost a year. How I wish this therapy/treatment could extend in our country. Especially that we are from a third world country. :(
In Malaysia, we currently raising a fund for baby Naail to undergo the gene therapy treatment. Total cost is around 2.6M USD. We managed to raise 1M++ USD as of today. Half way to go. We can do this 💪🏻
I think this baby girl was saved by the company I work for merck millipore... we had a townhall meeting a couple of weeks ago and they showed this video of this family... glad that she is ok... life science is awesome... 😎👍🏽
@@kabiruddin9134 I don't know much but you have the option of a fairly new medicine called spinraza (public name), my sister is on that medication and its seems to slow/almost stop her muscles form deteriorating. Also, if the child is still young (0-2 years), there is a new gene therapy called zolgemsa i think, where the gene therapy is passed throught the liver. I would also suggest that if your child is not on a ventilator/trached, you ought to do that. It really improves the quality of life and the life expectancy of children with SMA type one. Hope this helps.
This is amazing but still so out of reach to most of the children here in Turkey. I watch them slowly fading away but the price is too high and there is not enough time to collect all those dollars. It’s breaking my heart!
Don't worry. I am Indian from Kerala. Ayurveda show great results in Manegmant of SMA. Dr Roshni Anirudhan treat me and save me from death. If you search as roshini anirudhan in TH-cam or Google you can see her interviews etc. If you see me please open this site:english.mathrubhumi.com/news/offbeat/read-the-story-of-poojit-who-lies-on-his-desk-in-classroom-and-studies-kerala-1.3641513
Poojith The Real Stories i had lost my first baby because of SMA1 now my second baby has the same sma1. We are going to do the gene therapy I don’t know how much it will effect.
In Malaysia we have 2 babies that need help from this disease. 1st baby we have success collecting 2.125 million USD. 2nd babies are on going collecting donations with the same amount. Today 15/6/23 is the due date and it almost hit the target.
In Poland we also have couple of babies with that SMA1 and that therapy costs about 3 Milion dollars each. It's huge but people fights for them by themselves because our gouvernment didn't even try to give some money. 😢 We believe that they can fly to USA for their treatment soon. (sorry for my bad english)
Kiaan Singha from Tripura, India has been diagnosed with SMA type-1. He is seven months old. But the gene therapy is very expensive to afford. That's why they have started a crowd funding on ketto. Do support him. Hope for the best. 🙏
Made me very sad to read all the comments from parents from countries where this is not available desperate to help their children. This video is couple of years old so I hope it's more available now.
My nephew is 50 days old and was diagnosed with SMA1 No one has talked to us about this Drug. Does anyone with SMA1(under the age of 2) a candidate for this drug? Please let us know. This could be literally a life saving situation!
:( my suster is in the hospital right now cause of this. The only cure is in america and im in the philippines shes rlly in pain but im trying hard to get over when she passes away.
@@daniellemccarter5706 here are step by step instructions, if you have further questions I can be found on FB: th-cam.com/video/qE8JYf2G6UI/w-d-xo.html
Hi! I need to get in touch with parents of little Evelyn. My friends baby was just diagnosed with SMA 1. They have couple question to ask. I tried to search on FB, but didnt find any contact on them. Anyone can help?
Plz tel me what shuld i do i have baby girl...she is also dignosed sma in 6 mnth old n now she is 8 mnths....plz tel me 1st of all what is important to do with her????
For Any Assistance in SMA treatment contact this aid community via email: pharmadragon72@gmail.com.. They offer Spinraza treatment for lesser cost world-wide. They also assist my family in helping my 2yrs old neiphew recover from SMA with a cheeper cost.
I wish children who fight SMA that thanks to innovative medical work they will recover and fulfill their dreams. The parents of these children always hope that they will succeed ❤️😀Good luck and great respect 🕊️🤝 #Health #Life #SMA ❗
I am truly amazed what science can accomplish these days. If it was left up to God, she would die like her sister- it's scientists and doctors who go above and beyond to help kids like her.
It did not helped our son.. he died 3 weeks ago after he got Zolgensma after 10 days old.. he improved in movement but he could not breath anymore after 3 month’s
Hi I am from India , please advise how can I take this treatment to my baby boy he is 7 month old and he is suffering SMA type 1 and what is the cost in this treatment Please help me
Hello guys and dear doctors I have one cute brother he is now 15 but i think he has SMA he is so keen but can’t swallow and can’t move can’t walk... I am living in Afghanistan here is no good doctor as well so please tell me a way please please please guys🙏🙏🙏
I am from India ,my daughter also suffering from same disease ,but I have no option,as she is heading towards death,I am helpless if someone can hear my voice,plse reply
My grandbaby was diagnosed w/ SMA 1 in August of 2021 and she was given Zolgesma because it would give her fighting chance at life. Unfortunately she passed away at 9 mos old 2021. My heart aches for her - She was so pretty with her big brown eyes and long lashes like her Momma- babygirl was always smiling. 🐣 I am very happy for the babies who were treated for SMA 1. I often wonder WHAT IF that disease was treated sooner than August ? Might Adira be living today ???? This heart ache I feel is like no other...
Kindly answer if. There is any treatment for muscular distrophy.i am waiting for an answer so that I can help my child to live happily.pls tell me if any treatment of gene therapy is available. .pls.
it is indeed heartwarming, however, personally, knowing this, I'd never go for a second bio child but adopt instead. genes are just genes - they don't matter if you want to raise and love a little human, but they do matter when damaged as they cause complex diseases. Evelyn will still have issues and might suffer much more in the future as the way the medicine works has not been well established yet. I'd consider it my responsibility to save suffering to a little being by deciding not to bring it into this world and reduce existing suffering of another little being instead.
They had a 1/4 chance of having a child affected with it. To have two children affected by it is a 1/16 chance so it was incredibly unlikely this situation was to occur, however i agree they shouldn't have had another child
@@maiachoat4383 it's the same chance for each child. we are not talking about the purely mathematical probability of both children getting the disease, but of a likelihood of a single child being born with the sickness, which remains the same). also, I didn't say they shouldn't have had another child - just that I wouldn't do it. their decision was their to be made...
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)
We just got approved for this life saving drug. Thank God for hope for our daughter
How is your daughter now? My son sma type 2 and waiting for oregon health plan to approve.
I am Indian from Kerala. Ayurveda show great results in Manegmant of SMA. Dr Roshni Anirudhan treat me and save me from death. If you search as roshini anirudhan in TH-cam or Google you can see her interviews etc. If you see me please open this site:english.mathrubhumi.com/news/offbeat/read-the-story-of-poojit-who-lies-on-his-desk-in-classroom-and-studies-kerala-1.3641513
Poojith The Real Stories i’m from Kerala brother where is this location?
How is ur doughter now she is improving
@@Inaaya02 apka baby kesa hai ab??
When I saw baby Josephine who passed away due to SMA type one, it made me tear up because my sister also has the same condition. They gave her six months to live and now she is 8. I just want to thank the Lord for the miracle put on her. She already has been taking spinraza for 1 1/2 years but the progress is not as quick. I was reading online about zolgasma and it said it could be administered to children under the age of 2. I really hope that there will be amendments in the future so that she can recieve the one time treatment as well.
Rest easy baby Josephine, we all love you!!
Sorry to hear about your sister
Did she take Zolgenzma?
I lost my 2 brother when they were 27 yrs and 14 yrsold, he was sma type 1,he was very intelligent and smart I love him so much, I can't hold my tears up
Plsss stay stronggg
I lost my niece who passed away on 26 may 2021 even she was suffering the same😭😭
This warms my heart. Blessings to the family and Dr. Mendell.
Please donate do Emilly!
A Brazilian little baby with less than 1 month to be able to take the Zolgensma.
This remedy it's her chance to have a better life: vaka.me/864787
This is her story th-cam.com/video/AIKfB2oBLwI/w-d-xo.html
vaka.me/864787
vaka.me/864787
vaka.me/864787
vaka.me/864787
PLEASE, HELP US!
Siyona case from nepal brought me here
Oh god please save little angel 😭😭😭😭
Our baby is 4 weeks old and just got the Zolgensma Gen therapy in The Netherlands. She has no sympthoms yet she moves like a “normal” baby. We just need to wait now till the grows up to see is her body is producing enough SM1 & SM2 Gen to move like normal kids. We just goinna hooe for the best❤
Hi, i would like to know how your little girl is feeling now ? Do you see improvements ? how does she move two months after the treatment?
That's amazing how fast the research has gone to now with children having no symptoms.
Great hope she is doing good now
So awesome that there are now TWO therapies for SMA. Congratulations guys and best of luck 😎
So happy to see Evelyn living her life to the best... Much love ❤️
We cant wait to see our baby siyona happy like evelyn please pray for her 🙏☺️
I cried after watching the video. Im a home healthcare nurse and care for a beautiful 9 year old little girl with Type 1, and understand how expensive the gene therapy, but wish all regardless of age could receive it in hope some improvement or at least stop the progression. This child is so smart, so eager to learn and socialize. Vent dependent, but keeping her active and muscles strong. Spinraza quarterly. Praying for miracles- so fortunate for Evelyn and all who qualify for this amazing genetic infusion. Since it works by infusing the missing gene into cells, it looks to reason it would do the same for anyone at any age, even if better outcomes for the very young. Staying hopeful. G~d bless and thank goodness for these amazing scientiests and physicians.
I think everyone should get it as looking at this little girl the change is huge. If there is a medication that is this life chancing it shouldnt be about money but about humanity and human rights, now these people will get the chance to live a life almost like everyone else if given as fast as possible. As they wont need carers and will be able to work that will reduce some of the cost too. That type is or was terminal, it's absolutely amazing to see the difference in the little girl.
Such a great story. I am very happy to see all the progress that is going on with this horrible disease. I lost my sweet boy to SMA 1 in 1995, he was 10 months. Back then there was nothing Dr.s could do but issue a DNR and refer us to hospice. I miss him each and every day.
As a mother who has lost infants due to unrecognized treatable complications, and as a doctor who works in this field, my condolences. I know it can take years to return to the “new” normal. Thank God for those who worked for these new treatments.
Jane Delp I’m so very sorry for the loss of your son. A school friend in my sisters year had Sma and passed away at the end of 1994. We are still totally devastated by her passing. How I wish Spinraza could have been available back then. Xx
Jesus ee little baby visayam lo help cheyyu.Jesus ki Prayer cheyyandi.plz andaru
🙏plz help Jesus
THIS IS AMAZING. I knew someone who had a child with SMA, she died at 5 years old.
My baby cousin has SMA type 1, and she is now 6 will be 7 in April, beating the odds and with God all things are possible
How is your baby girl now?
Hallelujah!! I’m so sorry for your loss and am so happy for your baby to be a success and able to live her life!! ❤️🙏
How I can get access to this hospital
such an inspiring story.....i strongly pray that one day all the children and the individuals suffering with SMA does get this treatment at their reach...
She is sooo beautiful... I wish her nothing but happiness and prosperity in her little life..
What a beautiful ending to a tragic story.
I hope my baby can be this healthy I’m so scared he’s only a week old can y’all please keep me and my baby in y’all prayers. Things like this give me so much hope for my son. I hope everyone’s baby is fine and doing fantastic
Hi, how is your son doing? He sounds like he’s the same age as my son who also has SMA. I hope all is well. Please reach out to me if you have any questions or just a listening ear :)
🙏🙏🙏
I lost my 2 baby sisters when they were almost 2 years old.. after their passing away my parents didn’t want to risk having another child and now I’m an only child and they’re too old now to have more kids.. I feel so sad I wish back then there would be this medicine, I would’ve had a bigger family and a happier life
I pray for baby Shams to complete her medicine cost asap. Last months been crazy for us.. we've been trying to raise funds to save her before it's too late 💔 51% done and 49% left to go. We only have 3 months left. 😢
I am a post graduate intern from the Philippines and I handled patient with this kind of disease. He was admitted on our institution for almost a year. How I wish this therapy/treatment could extend in our country. Especially that we are from a third world country. :(
In Malaysia, we currently raising a fund for baby Naail to undergo the gene therapy treatment. Total cost is around 2.6M USD. We managed to raise 1M++ USD as of today. Half way to go. We can do this 💪🏻
Pray 4 my baby she have SMA type 1 this is my 2nd baby i lost my baby boy this is my second baby pls pray for her we cant afford this injection....
My heart goes out to you. Praying for your precious baby! How is she doing?
It's a miracle truly 🙏
Such a complex diesese and she is saved.its miracle
I think this baby girl was saved by the company I work for merck millipore... we had a townhall meeting a couple of weeks ago and they showed this video of this family... glad that she is ok... life science is awesome... 😎👍🏽
My sister has SMA type 1 and she is 8 years old and it's honestly a miracle
Hai
My child have the same disease.can you guide me the treatment procedure pls.
@@kabiruddin9134 I don't know much but you have the option of a fairly new medicine called spinraza (public name), my sister is on that medication and its seems to slow/almost stop her muscles form deteriorating. Also, if the child is still young (0-2 years), there is a new gene therapy called zolgemsa i think, where the gene therapy is passed throught the liver. I would also suggest that if your child is not on a ventilator/trached, you ought to do that. It really improves the quality of life and the life expectancy of children with SMA type one. Hope this helps.
Also the spinraza is administered through the spinal cord
How is your sister now?
This is amazing but still so out of reach to most of the children here in Turkey. I watch them slowly fading away but the price is too high and there is not enough time to collect all those dollars. It’s breaking my heart!
You guys are great.
Please help us to get her treatment done,and how we can approach this drug..
This Is amazing ❤
For people on here who can't afford it, the genetic sequence that Zolgensma used is public info. Their administration protocol as well.
God bless you
I am in india l lost my child because of SMA
Don't worry. I am Indian from Kerala. Ayurveda show great results in Manegmant of SMA. Dr Roshni Anirudhan treat me and save me from death. If you search as roshini anirudhan in TH-cam or Google you can see her interviews etc. If you see me please open this site:english.mathrubhumi.com/news/offbeat/read-the-story-of-poojit-who-lies-on-his-desk-in-classroom-and-studies-kerala-1.3641513
But my son is no more
@@xplore.360 Oh. If you know someone suffering with SMA please share this news to him. God bless you.
Poojith The Real Stories i had lost my first baby because of SMA1 now my second baby has the same sma1. We are going to do the gene therapy I don’t know how much it will effect.
@@arshad5316in which country do you live?
In Malaysia we have 2 babies that need help from this disease. 1st baby we have success collecting 2.125 million USD. 2nd babies are on going collecting donations with the same amount. Today 15/6/23 is the due date and it almost hit the target.
Hello for dmd gene theraphy when get FDA approved answer me please
My son is 3 year old he suffering from smn1 Gene 'please tell me evlen Gene therapy name
In Poland we also have couple of babies with that SMA1 and that therapy costs about 3 Milion dollars each. It's huge but people fights for them by themselves because our gouvernment didn't even try to give some money. 😢 We believe that they can fly to USA for their treatment soon. (sorry for my bad english)
Marta 83 Why do they have to fly to USA is it cheaper here.
Danielle Mccarter because these treatment is possible only in USA
@@MartaM1412 true..a romanian mother fight for her baby also..but she said is 2,2 million usd not 3
Wow, excellent result
Kiaan Singha from Tripura, India has been diagnosed with SMA type-1. He is seven months old. But the gene therapy is very expensive to afford. That's why they have started a crowd funding on ketto. Do support him. Hope for the best. 🙏
Hats off to you
Made me very sad to read all the comments from parents from countries where this is not available desperate to help their children. This video is couple of years old so I hope it's more available now.
My nephew is 50 days old and was diagnosed with SMA1 No one has talked to us about this Drug. Does anyone with SMA1(under the age of 2) a candidate for this drug? Please let us know. This could be literally a life saving situation!
Yes only child under the age 2 can take zolgensma. Also you need to come to USA for the treatment. You can find more info in their website
It seems very similar to ALS? The gene therapy is truly incredible
How i can acess this hospital for my child with SMA
Hey there... Please tell me which gene therapy you applied for Evelyn??
Hi Nivedita, may I ask if you have someone with this problem? I want to connect with you please as i am also a parent for such.
@@dhawalkes Hello Dhawal, my son is diagnosed with SMA, type 1. He's now 8 months old.
Mem plz contact me my son 7 month sma type first
@@niveenovee madam plzz sujjestion me
@@rishidaadda4964 Please search for curesmaindia.org.. This is parent led community in India..
:( my suster is in the hospital right now cause of this. The only cure is in america and im in the philippines shes rlly in pain but im trying hard to get over when she passes away.
I’m so sorry to hear this!
Wow. God bless her.
Precious Angels🙏🏽🦋
When Treatment in SMA1?
Pliss..
God bless her
Thanks.
Can someone help me to get this treatment for my 5 month baby he deducted with this rare disease SMA -1
Hopefully they can make this for older kids my siater is 8 with SMA type 1
The genetic sequence that Zolgensma used is public info. Their administration protocol as well.
GMO Raulicus Why not guide them to what to look up instead of keep reposting same comment everywhere.
@@daniellemccarter5706 here are step by step instructions, if you have further questions I can be found on FB:
th-cam.com/video/qE8JYf2G6UI/w-d-xo.html
Hi , is there update about LGMD2B gene therapy ?
Does anyone know how to get started for getting gene therapy? Whom should we reach out and at what age we can give gene therapy?
I'm suffering from spino cerebellar ataxia... Is there any permanent treatment available for SCA
Awesome 🙏🏽😇
😮а сколько стоит укол сма в америке?
My niece is also diagnose with sma type one plzzz help treatment is very hight amount
Hi! I need to get in touch with parents of little Evelyn. My friends baby was just diagnosed with SMA 1. They have couple question to ask. I tried to search on FB, but didnt find any contact on them. Anyone can help?
You can refer to case of "siyona" from nepal her parents are trying to collect fund for treatment. Hope it help. Good luck
This treatment is not available in pakistan please help me.My son has SMA type 1
Are you in karachi?
Koi madad nhi kr sakta seway Allah Pak k
How is your baby now?
My niece died from this in 2018 she was only 7 months old . Sma type1
When for BMD?🥺
🙏
Awesome 👍🏽
Can they do intra uterine testing ?
I read that an unborn baby can get a SMA 1 treatment in utero and develope normally after the birth.
Plz tel me what shuld i do i have baby girl...she is also dignosed sma in 6 mnth old n now she is 8 mnths....plz tel me 1st of all what is important to do with her????
Sorry to hear this.
Start using TRIOLOGY (BIPAP) FOR HER.CONSULT WITH PEDIATRIC PULMONOLOGIST.
The genetic sequence that Zolgensma used is public info. Their administration protocol as well.
Madam which theraphy
For Any Assistance in SMA treatment contact this aid community via email: pharmadragon72@gmail.com..
They offer Spinraza treatment for lesser cost world-wide.
They also assist my family in helping my 2yrs old neiphew recover from SMA with a cheeper cost.
@@scottarnold9199 is this true..I need help for my baby girl
Anybody pls give me contact
Can a Pakistani child access this Gene therapy.pls guide how is this possible
How is your baby now?
I wish children who fight SMA that thanks to innovative medical work they will recover and fulfill their dreams. The parents of these children always hope that they will succeed ❤️😀Good luck and great respect 🕊️🤝
#Health #Life #SMA ❗
I have twins baby 6 months of age with SMA , what should I do please????
One time injection costs 2.1 million dollars? Why?
i really can not understand that too, why????
Weil Forschung Milliarden kostet und die Kosten über den Preis reinkommen müssen. Es ist aber eine relativ seltene Erkrankung.
I am truly amazed what science can accomplish these days. If it was left up to God, she would die like her sister- it's scientists and doctors who go above and beyond to help kids like her.
but its God who gave that wisdom and Knowledge to the scientists.....
Please please please what is the name of the drug i want to help my nephew she is 3 months old please i beg you to help me 😭😭
How is your nephew now?
It did not helped our son.. he died 3 weeks ago after he got Zolgensma after 10 days old.. he improved in movement but he could not breath anymore after 3 month’s
Type 1 SMA? Waren er al symptomen bij de geboorte?
I lost 2 sons to this genetic disorder
Hi I am from India , please advise how can I take this treatment to my baby boy he is 7 month old and he is suffering SMA type 1 and what is the cost in this treatment
Please help me
It's something around 2 mln $...
ab apka beta kesa hai?
He is no more 😭
oh m so sorry but kaya ap mje is deases ki mazeed info de sakti hain?
@@SmilewithTanu-___Tanu-Nigam kindly replay me.
Plz help out for mi.😢
My baby effective .
He born five month ago
But leggs movement zero.
Where i go
What should I do😢💕
Contact the drug manufacturer. A lot of times they will give you the meds for a fraction of the cost.
How is your baby now?
Hello guys and dear doctors
I have one cute brother he is now 15 but i think he has SMA he is so keen but can’t swallow and can’t move can’t walk...
I am living in Afghanistan here is no good doctor as well so please tell me a way please please please guys🙏🙏🙏
Williamson Stream
why usa only gets for free and other people
my god helps to children with SMA
But it is so expensive.. Out of reach ☹️
I am from India ,my daughter also suffering from same disease ,but I have no option,as she is heading towards death,I am helpless if someone can hear my voice,plse reply
I am also from India,my daughter 4years old and she is also having same problem sma type 2…I don't know what can do.. please help me any one .
Great. Make this treatment 's cost low as possible.
Even we already have the cures, but this medication is too expensive for us 😞
Knowledge is power. Making children so they suffer with a fatal disease is selfish. Gene therapy thankfully helps your daughter.
Gane therapy cost
Kids are dieing as their parents are not able to purchase that injection and they're not able to gone through the gene therapy. 😭
God bless
God is Good!
We are unlucky one...we are lost our baby ...that time.... this therepy is not available..
This is miracle of modern medicine. I hope it helps other litle angels too.. but im preety sure this treatment is not cheap.
please reduce the price of zolgensma
My grandbaby was diagnosed w/ SMA 1 in August of 2021 and she was given Zolgesma because it would give her fighting chance at life. Unfortunately she passed away at 9 mos old 2021. My heart aches for her - She was so pretty with her big brown eyes and long lashes like her Momma- babygirl was always smiling. 🐣
I am very happy for the babies who were treated for SMA 1. I often wonder WHAT IF that disease was treated sooner than August ? Might Adira be living today ???? This heart ache I feel is like no other...
ALLAH YAR VE YARDIMCINIZ OLSUN
my Niece is suffering same condition but no treatment is here (PAKISTAN) 😥😥😥😥
@naweedshaikhh how is your niece now?
@@fatimabzu93 she's died on 18 june 2022
They lost a child to this horrible disease and then got pregnant again? 🙁
I salute Biological science, keep growing 👍
Kindly answer if. There is any treatment for muscular distrophy.i am waiting for an answer so that I can help my child to live happily.pls tell me if any treatment of gene therapy is available. .pls.
Follistatin gene therapy
How does this work?
it is indeed heartwarming, however, personally, knowing this, I'd never go for a second bio child but adopt instead. genes are just genes - they don't matter if you want to raise and love a little human, but they do matter when damaged as they cause complex diseases. Evelyn will still have issues and might suffer much more in the future as the way the medicine works has not been well established yet. I'd consider it my responsibility to save suffering to a little being by deciding not to bring it into this world and reduce existing suffering of another little being instead.
They had a 1/4 chance of having a child affected with it. To have two children affected by it is a 1/16 chance so it was incredibly unlikely this situation was to occur, however i agree they shouldn't have had another child
@@maiachoat4383 it's the same chance for each child. we are not talking about the purely mathematical probability of both children getting the disease, but of a likelihood of a single child being born with the sickness, which remains the same). also, I didn't say they shouldn't have had another child - just that I wouldn't do it. their decision was their to be made...
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)