Spinal Muscular Atrophy (SMA) Support Group
Spinal Muscular Atrophy (SMA) is a term applied to a number of different disorders, all having in common a genetic cause and the manifestation of weakness due to loss of the motor neurons of the spinal cord and brainstem.
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As most of you know nearly 7 years ago, I lost my grandson to SMA. Over this past weekend, my great nephew Ryker ended up in Cooke's Children Hospital in Dallas. He is 10 weeks old today. He was having difficulty breathing and wasn't eating. So far all they are being told is that it is muscular. I had to contact the maternal grandmother, since the paternal grandmother (my late sister in law) is no longer available and I did not want to upset the parents and enlighten her about Gavin and the what is going on with Ryker. After talking to her, I even became more concerned. Everything she was telling me about Ryker is what I keep telling Renee about Gavin. Sherry was glad to get all the info on SMA and she was able to make the hospital staff aware of the possibility of this genetic disorder in our family. Right now all we can do is pray. There has been some progress in drug development to help the little ones affected with this, but not nearly enough.
deleted_user
Hi there:) My name is Junior Marsters, Im from New-Zealand, i was diagnosed with SMA when i was around this young boys age, i dont know the type of SMA i was diagnosed with, i see you mentioned certain drugs developed, what are they and in what way do they help??? im very interested in finding out what there is out there for the condition:) how is Ryker doing now??? i hope all is well with you and your family:) God bless
deleted_user
ps. im sorry if i come accross to forward:-)
deleted_user
I am so sorry to hear of the loss of your grandson. I hope your great nephew Ryker is doing well. I can imagine it would be hard for the parents to learn of Ryker to deal with these difficulties and I think it was great of you to discuss SMA with the maternal grandmother. I hope all is going well.
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