Sunny Quackers there are different types of SMA- with type 1, the death rate is over 90% before the first year. Other types of SMA sufferers can live much longer...
Two years ago a new medication was approved to help youngsters with SMA live better and stronger - I hope this pretty little girl has benefitted from the new treatment and if so I hope to see another video soon 😁
Thank you for your valuable information, it helps us to have hope for Sebastián who suffers from the same disease and unfortunately in Peru they deny him the opportunity for treatment
Hello Salvemos, If you are interested in knowing more about a treatment for Sebastián, please feel free to make an inquiry and one of our representatives will contact you: info.beikebiotech.com/
It pains me to point this out and I am sorry, but... If you have one child with SMA, why would you get another child? Clearly both of the parents carry the mutated gene and the risk of other offspring having the same defect is substantial... Why would you risk your child getting a sickness like this?!?
I totally agree, with you and 100 years ago such parents were sterized after giving birth to the first child this inclused eplepsey children. They now have a test to test for it, it is crazy to not to test for it then abort if possitive. Much worse then down baby who just slow learners
+mike derocco You think 50/50 are good odds?!? Also there is a 25% chance that you will get SMA, not 50%. There is a 50% chance you will inherit the gene thou. Still... 25% chance that your child will inherit a chronic disorder is not defenseable like that... The experimental treatment that recently became available was not avaliable when I wrote that comment. Maybe you are the one who need to educate yourself?
+Rosalie Renner Sure it is possible, but I don't think this is a decision parants should make for their children. Parents deciding that life with this disorder is not totally bad and that therefor their potential child can live with that... Sounds wrong to me. Ask the child when it has grown up if it would rather not have the disorder. I am guessing the majority would answer that they rather not. So who are you to make such a life altarring decision for your child...
+xaythor I think the child should decide itself when it's old enough. then it can also simply say "no" and die. You can at least try it. for yourself and for God, it is his plan and nobody should cancel it. This is my opinion. Do you understand?
The people who question these parents are very uncompassionate. Do not write hurtful comments, just stop watching if you don't like it. I can argue strongly against abortion by the way. But Mom of this video, please explain to me where is this place? My son has Myotubular Myopathy. The lung weakness is similar. Please let me know so I can figure out the price and travel. Thank you
Hello Muhammad. Please make an inquiry and one of our representatives will contact you to give you more information and review your daughter's condition: info.beikebiotech.com/ Thank you.
Hello Patricia, please make an inquiry and one of our representatives will discuss with you about the different treatment options available: info.beikebiotech.com/
I am so happy for her .. living with this condition is so tragic and I am so happy that she can have any improvement
Hi
she has a lot more control over her body than any other (4+) kids with SMA that I have seen in videos.
Sunny Quackers there are different types of SMA- with type 1, the death rate is over 90% before the first year. Other types of SMA sufferers can live much longer...
Well done mum Brave little princess God bless you all I hope your quality of life still continues to progress
Two years ago a new medication was approved to help youngsters with SMA live better and stronger - I hope this pretty little girl has benefitted from the new treatment and if so I hope to see another video soon 😁
What a lovely positive morher and girl, hope she gets even stronger.
love the way you talk so positive:)
It's so AWSOME that she's able to get this treatment! God Bless Y'ALL! ➕☝💞💫
When i watch this video, i hold my child. 😢😭 I am not a strong woman. Awesome... wonderfull life.
What a sweetheart ... so cute, charismatic and bright!
Sie ist so ein zartes Persönchen❤ich wünsche dir alles Gute!
Beautiful we girl wish her good luck and truly hope she gets stronger and something good works really good for her wet pet xx
Iam so happy for her ❤
Thank you for messaging!
She is s o sweet 😍🥰😘
Be strong, little girl
And my deepest condolence to your loos from her little baby brother :(
Thank you,
please check the news article about: Can Stem Cell help Cerebral palsy.
stemcelltreatmentnow.com/can-stem-cells-help-cerebral-palsy/
@@Beikebiotech my son 2 yers age he affected SMA career in banglades plzz help
Hello, please make an inquiry here: info.beikebiotech.com
One of our representatives will give you more information about our treatments. Thanks.
So ein süßes starkes Mädchen ❣️
Thank you for your valuable information, it helps us to have hope for Sebastián who suffers from the same disease and unfortunately in Peru they deny him the opportunity for treatment
Hello Salvemos, If you are interested in knowing more about a treatment for Sebastián, please feel free to make an inquiry and one of our representatives will contact you: info.beikebiotech.com/
It pains me to point this out and I am sorry, but...
If you have one child with SMA, why would you get another child? Clearly both of the parents carry the mutated gene and the risk of other offspring having the same defect is substantial... Why would you risk your child getting a sickness like this?!?
I totally agree, with you and 100 years ago such parents were sterized after
giving birth to the first child this inclused eplepsey children.
They now have a test to test for it, it is crazy to not to test for it then abort if
possitive. Much worse then down baby who just slow learners
because it is possibly to live with SMA. life is not totally bad
+mike derocco
You think 50/50 are good odds?!?
Also there is a 25% chance that you will get SMA, not 50%. There is a 50% chance you will inherit the gene thou.
Still... 25% chance that your child will inherit a chronic disorder is not defenseable like that...
The experimental treatment that recently became available was not avaliable when I wrote that comment. Maybe you are the one who need to educate yourself?
+Rosalie Renner
Sure it is possible, but I don't think this is a decision parants should make for their children.
Parents deciding that life with this disorder is not totally bad and that therefor their potential child can live with that... Sounds wrong to me.
Ask the child when it has grown up if it would rather not have the disorder. I am guessing the majority would answer that they rather not. So who are you to make such a life altarring decision for your child...
+xaythor
I think the child should decide itself when it's old enough. then it can also simply say "no" and die.
You can at least try it. for yourself and for God, it is his plan and nobody should cancel it. This is my opinion. Do you understand?
The people who question these parents are very uncompassionate. Do not write hurtful comments, just stop watching if you don't like it. I can argue strongly against abortion by the way. But Mom of this video, please explain to me where is this place? My son has Myotubular Myopathy. The lung weakness is similar. Please let me know so I can figure out the price and travel. Thank you
Beautiful girl, beautiful eyes
Linda que Deus ti abençoe ❤️🙏
Thanks.
The nurse looks just like her.
Beautiful kid
Plz help me I am worried about my daughter.she is also suffering from SMA 1 she is now 7 month .I am waiting your rply
Hello Muhammad. Please make an inquiry and one of our representatives will contact you to give you more information and review your daughter's condition: info.beikebiotech.com/
Thank you.
Do u have outpatient therapy in your city
Hello Patricia, please make an inquiry and one of our representatives will discuss with you about the different treatment options available: info.beikebiotech.com/
Where is this taking place?
Hello, the treatment is provided in Bangkok, Thailand. For more information, feel free to make an inquiry here: info.beikebiotech.com/
awee
🙏💯❤️
my son 2 yers age he affected SMA career in banglades plzz help
Get her little leg weights velcro for ankles.Swimming. God bless
what
Plz help nepali baby siyona shrestha she’s suffering from same disease we need help for treatment plz plz help 😭😭😭😭😭😭😭🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏
Hello, please make an inquiry here and we will give you more information about the treatment of Siyona's specific case : info.beikebiotech.com