# My baby girl has Spinal Muscular Atrophy (SMA) **URL:** \ **Category:** Miscellaneous and Personal Stuff I Must Share\ **Created:** [July 18, 2010, 3:17pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126 "2010-07-18T15:17:44Z")\ **Posts on this page:** 20\ **Page:** 17
**Author:** ![Tristan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/tristan/32/18058_2.png) [@Tristan](https://boards.straightdope.com/u/Tristan)\ **Post date:** [August 7, 2010, 7:00pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/321 "2010-08-07T19:00:17Z")
> [@Bearflag70](#): > > > [@Tristan](#): > > > > If something goes amazing, and it turns out you don’t need the donations… a misdiagnosis, or a lotto win or something, then take the money and kick it to the FSMA folks or something. Seems an appropriate course of action. > > We would never keep money we don’t need, and any surplus would go to FSMA. I never would have thought otherwise. You are, after all, a Doper. heheh ---
**Author:** ![missred](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/missred/32/14096_2.png) [@missred](https://boards.straightdope.com/u/missred)\ **Post date:** [August 7, 2010, 7:32pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/322 "2010-08-07T19:32:49Z")
Me three on the t-shirts. Give LittleOwl a hug from one of her many Doper “aunties.” ---
**Author:** ![carnut](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/carnut/32/3531_2.png) [@carnut](https://boards.straightdope.com/u/carnut)\ **Post date:** [August 7, 2010, 8:39pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/323 "2010-08-07T20:39:56Z")
Bearflag, I am so sorry to hear this news. Cherish your little owl and know we are all rooting (hooting?) for your family. ---
**Author:** ![DoperChic](https://avatars.discourse-cdn.com/v4/letter/d/a9a28c/32.png) [@DoperChic](https://boards.straightdope.com/u/DoperChic)\ **Post date:** [August 7, 2010, 9:38pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/324 "2010-08-07T21:38:09Z")
> [@Chessic\_Sense](#): > > > [@Poysyn](#): > > > > I would be happy to buy a shirt, please do post how to buy one > > Some time next week, we’ll have them printed. I’m going to see my aunt this weekend and give her the final details. I’m thinking $15 a shirt. Do you guys think that’s too much or too little? I think that’s about right. How about making $15 a suggested donation? That way people can donate more if they wish. Or on second thought, that does open the door to people possibly donating \*less \*than the $15… ---
**Author:** ![supergoose](https://avatars.discourse-cdn.com/v4/letter/s/aeb1de/32.png) [@supergoose](https://boards.straightdope.com/u/supergoose)\ **Post date:** [August 7, 2010, 10:44pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/325 "2010-08-07T22:44:42Z")
> [@DoperChic](#): > > > [@Chessic\_Sense](#): > > > > Some time next week, we’ll have them printed. I’m going to see my aunt this weekend and give her the final details. I’m thinking $15 a shirt. Do you guys think that’s too much or too little? > > I think that’s about right. How about making $15 a suggested donation? That way people can donate more if they wish. > > Or on second thought, that does open the door to people possibly donating \*less \*than the $15… Yeah. I think the thing to do is to have a set price for each shirt, but make it clear that the proceeds are for charity. I imagine someone who wanted to donate more would. Or make $15 the \*minimum \*donation amount. ---
**Author:** ![MoodIndigo1](https://avatars.discourse-cdn.com/v4/letter/m/e8c25b/32.png) [@MoodIndigo1](https://boards.straightdope.com/u/MoodIndigo1)\ **Post date:** [August 8, 2010, 12:44am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/326 "2010-08-08T00:44:59Z")
Me four on the shirts. I’ll keep tabs on this thread. 15-20 dollars sounds right to me. ---
**Author:** ![Salem](https://avatars.discourse-cdn.com/v4/letter/s/8c91f0/32.png) [@Salem](https://boards.straightdope.com/u/Salem)\ **Post date:** [August 8, 2010, 4:02am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/327 "2010-08-08T04:02:13Z")
First and foremost, my thoughts and prayers are with you and your wife and daughter. Miracles do happen. My niece was diagnosed with terminal cancer at the age of 1. And I remember the day we were given the diagnosis and how it felt to hold her at her baptism, just days later, as the priest gave her a special blessing, thinking that beautiful baby would be leaving us so soon. That baby is now a beautiful, vibrant 27 year old woman. There is hope. Inspired by **carnut** , he came up the seed of a great slogan, if you haven’t decided on something yet. How about “Little Owl, we’re all Hooting for you” I’ll hold you all in my prayers. ---
**Author:** ![Shayna](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/shayna/32/17976_2.png) [@Shayna](https://boards.straightdope.com/u/Shayna)\ **Post date:** [August 8, 2010, 7:53am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/328 "2010-08-08T07:53:24Z")
Spiny Norman and I send our heartfelt best wishes to you and your family. I can’t even begin to express how sorry we are to hear this news. ---
**Author:** ![Hippy\_Hollow](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/hippy_hollow/32/4841_2.png) [@Hippy\_Hollow](https://boards.straightdope.com/u/Hippy_Hollow)\ **Post date:** [August 8, 2010, 6:04pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/329 "2010-08-08T18:04:29Z")
So sorry to hear this news, **Bearflag**. Praying and hoping against hope for a miracle… they do happen. 🙂 ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [August 9, 2010, 5:51pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/330 "2010-08-09T17:51:22Z")
My mom’s latest advice: Write a letter to the Dallas Cowboys (our favorite NFL team) and ask the organization to support FSMA. Bless her impractical heart. ---
**Author:** ![Cyningablod](https://avatars.discourse-cdn.com/v4/letter/c/9fc29f/32.png) [@Cyningablod](https://boards.straightdope.com/u/Cyningablod)\ **Post date:** [August 9, 2010, 7:34pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/331 "2010-08-09T19:34:19Z")
Bearflag, I will make a point to be checking Getty’s caringbridge page from time to time. But if it’s at all feasible during this difficult time, please keep us posted here on the Boards, too. What I mean is, we really do support you, and it would help (me, at least) to have reminders of the ongoing challenges you face, so that we don’t let it slip our minds in the coming weeks/months. Continued best wishes. ---
**Author:** ![RTFirefly](https://avatars.discourse-cdn.com/v4/letter/r/c77e96/32.png) [@RTFirefly](https://boards.straightdope.com/u/RTFirefly)\ **Post date:** [August 9, 2010, 7:37pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/332 "2010-08-09T19:37:43Z")
> [@Bearflag70](#): > > My wife is asleep but I can’t fall asleep yet. > > Office diagnosis: Spinal Muscular Atrophy > > Genetic disorder - degenerative, leading to increased complications over time > > Life expectancy: Maybe 2 years. > > This is just horrible beyond words. Our baby girl. ☹ My heart goes out to you and your wife. I look at my little rascal, and know how thoroughly devastated I’d be if anything like this were to happen to him. I know that’s what you’re going through for real. You are in my every prayer right now. ---
**Author:** ![kopek](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/kopek/32/337_2.png) [@kopek](https://boards.straightdope.com/u/kopek)\ **Post date:** [August 9, 2010, 8:06pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/333 "2010-08-09T20:06:08Z")
> [@Bearflag70](#): > > My mom’s latest advice: Write a letter to the Dallas Cowboys (our favorite NFL team) and ask the organization to support FSMA. > > Bless her impractical heart. I’m on her side. What in this whole thing is “practical” after all? Heck - its worth a shot and being a little pushy about it too. May actually get me to stop cringing when the Cowslime win! (I see the “aunties” got their plug in so hugs from all the “uncles” too) ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [August 9, 2010, 8:20pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/334 "2010-08-09T20:20:23Z")
> [@kopek](#): > > > [@Bearflag70](#): > > > > My mom’s latest advice: Write a letter to the Dallas Cowboys (our favorite NFL team) and ask the organization to support FSMA. > > > > Bless her impractical heart. > > I’m on her side. What in this whole thing is “practical” after all? Heck - its worth a shot and being a little pushy about it too. May actually get me to stop cringing when the Cowslime win! > (I see the “aunties” got their plug in so hugs from all the “uncles” too) I just don’t expect much response from a huge organization like that. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [August 9, 2010, 8:34pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/335 "2010-08-09T20:34:39Z")
On the other hand, Joe Namath did show up at Bobby Brady’s house. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [August 9, 2010, 11:27pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/336 "2010-08-09T23:27:59Z")
I do want to again thank all the Dopers who contributed their hard-earned Doper Bucks to the Little Owl Fund. Know that you have already made a difference! Thank you! ---
**Author:** ![Kolga](https://avatars.discourse-cdn.com/v4/letter/k/e56c9b/32.png) [@Kolga](https://boards.straightdope.com/u/Kolga)\ **Post date:** [August 10, 2010, 12:42am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/337 "2010-08-10T00:42:15Z")
I just got back into town and just read this thread. My god and goddess. My heart goes out to you and your beautiful wife and daughter. ---
**Author:** ![moejoe](https://avatars.discourse-cdn.com/v4/letter/m/9de053/32.png) [@moejoe](https://boards.straightdope.com/u/moejoe)\ **Post date:** [August 10, 2010, 1:24am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/338 "2010-08-10T01:24:03Z")
> [@Bearflag70](#): > > The pediatrician called just to talk. I asked her about optimism vs. realism and her level of certainty absent the blood work. She said she was probably 90% certain it’s SMA. Even if it’s not SMA, she said there’s some serious issue going on. > > Apparently, there is an experimental clinic out of Stanford University. We’ll look into that. > > Otherwise, it appears, for now, we have located a benefit of 100 days of half pay. We’re still looking. That’s my neighborhood, if you need anything from there, while you’re there, anywhere anytime just please let me know. I’d be happy to visit the clinic on campus and gather info and/or contacts for you, or be of any help when/while/if you’re down here. Also I think you’d probably be surprised to find how many of your wife’s coworkers might be honored to donate vacation days. We had a similar situation with someone in my office and I was so happy that there was something I could do to help. ---
**Author:** ![MoodIndigo1](https://avatars.discourse-cdn.com/v4/letter/m/e8c25b/32.png) [@MoodIndigo1](https://boards.straightdope.com/u/MoodIndigo1)\ **Post date:** [August 10, 2010, 2:27pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/339 "2010-08-10T14:27:12Z")
Just to say that I’m rooting for you and the owlet, you’re in my thoughts. BTW, I love the blog, but I’m always overcome with emotion when I read it, so I haven’t posted a comment in the guestbook yet. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [August 11, 2010, 1:14am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/340 "2010-08-11T01:14:36Z")
The official blood work diagnosis is in. SMA confirmed. Not a surprise, but difficult nonetheless. [Previous page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=16) [Next page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=18)