SMA TYPE ONE. Spinal Muscular Atrophy! 1 Genetic leading killers....
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Uploaded by llohin on Dec 26, 2008
Sma is gene who has a carrier! One out of fourty people carry the gene. Most severe is type one, leading to death befor their second birthday. Most die between the ages of five to seven months.
Most struggle to survivie. Enna has type one and has crashed many times, fighting for her life. But families of sma can only fight for so long. Close to a cure, but not enough support and awareness.. SMA is often misdiagnosed. SMA can even afffect those in the whomb. Results an earlier death. How can life be this short, when more can be done. Support SMA, www.Petiotntocuresma.com to understand more
join families of SMA www.smasupport and other groups. SMA may not be as rare as we think. 1 out of 40 people carry the gene. Results so far are 1 out of 6000 that recieve the diagnoses, how many have been misdiagnosed? Sma has four types lealeading to adults! How can families fight without help!!! How can no one give our children the chance that is so close!!!!
Uploader Comments (llohin)
All Comments (6)
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I have type 2 SMA
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my lil nece also has sma1 her parents was told hat they wouldn't be able to join her 2. birthday with her,, she got two years old few days ago.. i'm so proud of her!! these kids makes people see the live in new light.. and whne people start asking about sma1.. and i answear i sometimes get tears in my eyes, but you thank god every day for each day you get with her! my sister and her husband(her parents) are the strongest people i know!
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U know, I know a VERY good way to teach others of her care.
To kind of give everyone a little tour of her room, and the equipment your little ANGEL must use to help stay healthy.
All her machines, her pulse ox, her ventilator, etc. God bless you all of you who are NOW IN MY PRAYERS FOREVER.
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What a sweety!!! My little girl has sma type one and trach/vent dependent too! Are you on SMAspace?
JColleen77 3 years ago
We are on smaspace and facebook as well. I would love to meet you . I am interested in learning as much as I can. Its great to see and hear of other families who can relate to us. I was told that not many sma children are trached. I was told by Toronto Dr's that no one ever goes this route with their SMA children and that no sma ever goes to school. I think I let them know their are lots, but the knowledge of our medical teams refuse to see that, and to see the hope.
llohin 3 years ago
can u please put some sma physical therapy and chest physio videos up
shoppingcameron 3 years ago
I will post some chest physio and such soon.Many blessings Lisa
llohin 3 years ago