Godspeed, Bearflag. You and your wife have a challenging journey ahead of you. May you find the strength to make every decision without regrets and enjoy every moment you have together. As others have said, remember we’re here for you.
I’m sorry, Bearflag. Sending good thoughts to you, your wife, and your little owl-baby. 
All our love, good thoughts and prayers from us to you.
I’m so sorry for this awful news. We’re sending good thoughts to your whole family.
I’m so sorry Bearflag. My family’s thoughts are with you and yours.
I signed up for FSMA the same Friday the doctor gave us the tentative diagnosis. I placed a call to the NorCal chapter Saturday morning. They called us back early Saturday afternoon and they were willing to spend their time just talking and answering all kinds of questions.
The people who run the NorCal Chapter are a couple who lost their son several years ago at age 6 months, but they have dedicated a good chunk of their lives to this issue and helping others. They basically run the NorCal chapter out of their home.
They decided to have another child but they ran prenatal SMA tests to ensure their second child didn’t have SMA. She said SMA isn’t common enough to be part of the normal prenatal testing, but they can run tests at 10 weeks of pregnancy. Apparently, they can also grow multiple embryos, screen them all for SMA, and implant one of the non-SMA embryos.
They offered to drive out to Sacramento from Santa Rosa as soon as they could. They would bring us materials, photos, and helpful hints. That’s a two hour drive each way. I am floored by their dedication and generosity.
They called us again a couple hours ago. They said they could drive out from Santa Rosa on Wednesday to meet us. She was more than willing to talk to me on the phone as long as I needed. I asked all kinds of questions, and she gladly answered all of them. I find the knowledge and demystification very helpful and comforting. I guess that’s a trait that drew me into SDMB in the first place.
They are trying to get in touch with some names of Sacramento area SMA parents we may be able to connect with. One of those parents lost twins, both to SMA. I can’t even imagine that.
Thank you all again for the kind words. We aren’t into prayer, but I appreciate prayers.
As far as the little owl’s condition, I don’t know that I would say she’s “seriously ill” at this point.
For now, she’s normal in every way except she is “floppy.” She can’t support her own weight when sitting up. She wiggles her feet but doesn’t move her legs around. She bends her arms at the elbow but can’t lift her entire arm at the shoulder. She lacks reflexes when tapped with the little rubber hammer.
Other than that, she’s a happy little girl. We have figured out that she really likes it when we move her arms and legs around. It probably feels good to get the circulation going. We move hers arms and legs really fast like she’s running, and she laughs and laughs.
God, how awful. My best wishes for you and your family Bearflag and my admiration for how well you are holding up.
I’m sorry. This must be very hard. I’m glad you found support from SMA.
I’m so sorry to hear about your daughter. How terrible.
i’m so sorry.
you and your family are in my thoughts and prayers.
enjoy every little smile, laugh, and moment. know we are here for you 'round the clock.
There are different forms of the disease that start at varying times of life, progress at different rates, and change life expectancy in different ways (in fact, there’s at least one form that doesn’t really change life expectancy at all). There is also one type that doesn’t even begin until adulthood with symptoms typically appearing in and after the mid-30s.
This is the post that finally got me. 
I was fortunate enough to spend some time with a family whose son was going through diagnostic procedure for SMA during clinicals. The mother just about killed me when she looked at me and said “But he doesn’t even look sick.” And that is pretty much the very moment I decided I probably am not cut out for pediatrics.
Your post reminded me of that. You have just about my whole heart right now, Bearflag. I am so sorry for you.
Damn, that sucks some serious ass.
My mom’s school district allows teachers to donate sick days to other teachers, and they often do when someone has a catastrophic family illness like this. You can’t get enough sick days like this to stay home through her entire life expectancy, but if she starts getting sick, it can be a real help psychologically and financially.
I’m so sorry, Bearflag70. Your description of your baby girl is so cute and sweet. How heartbreaking.
I’m so sorry. I hope you’re a stronger person than me, because I’m not sure I could keep going on.
Bearflag70 and family,
Thoughts, love and the best of wishes sent your way. Inadequate in the extreme, but I have no words to understand what you must be undergoing right now.
Would that I could say something more.
KB.
I’m so sorry.
There are no words. You and your family are in my heart and thoughts. I’m so sorry.
I want to wish you and your family strength and comfort.
Anybody reading this thread can’t help but go through some of the 7 stages of grief. The disbelief, the frustration, the anger at the unfairness.
If collective sorrow could be harnessed …
Damn. When I had a job at least I felt like I could throw money at a problem. I don’t understand the varying degrees of the illness but I wish the best outcome for your little owl.