# 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:** 15
**Author:** ![What\_Exit](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/what_exit/32/10652_2.png) [@What\_Exit](https://boards.straightdope.com/u/What_Exit)\ **Post date:** [August 5, 2010, 1:30am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/281 "2010-08-05T01:30:07Z")
I can’t imagine what you’re going through **Bearflag70** and I hope you stay strong during it. This is any parents worst nightmare. ---
**Author:** ![gardentraveler](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/gardentraveler/32/3576_2.png) [@gardentraveler](https://boards.straightdope.com/u/gardentraveler)\ **Post date:** [August 5, 2010, 2:06am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/282 "2010-08-05T02:06:08Z")
How about “I give a hoot for Little Owl!”? I think the past tense also makes it sound like she’s gone. Present tense might also be a stronger trigger for people who see us wearing the t-shirt to ask what it’s about. Regardless, I’m in and think you’re awesome, **Chessic** , for getting this going. Hugs for **Bearflag70** , Mrs. Bearflag and for that lovely little Owl. ---
**Author:** ![jellyblue](https://avatars.discourse-cdn.com/v4/letter/j/e480ec/32.png) [@jellyblue](https://boards.straightdope.com/u/jellyblue)\ **Post date:** [August 5, 2010, 2:38am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/283 "2010-08-05T02:38:57Z")
Such a beautiful, beautiful little girl and she looks SO happy. This is just so sad - I’m so sorry for you, it’s just heartbreaking. Thinking of you and your family… ---
**Author:** ![MoodIndigo1](https://avatars.discourse-cdn.com/v4/letter/m/e8c25b/32.png) [@MoodIndigo1](https://boards.straightdope.com/u/MoodIndigo1)\ **Post date:** [August 5, 2010, 3:47am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/284 "2010-08-05T03:47:43Z")
I’m so sorry your family has to face this, **Bearflag70**. Another doper sitting here with tears running down her face. Your instinct to enjoy your baby’s company and play with her are good ones, a source of happiness for you and her. I know from personal experience that it is important that she should feel your joy and comfort. Those moments will help you through whatever is to be. ---
**Author:** ![CanvasShoes](https://avatars.discourse-cdn.com/v4/letter/c/74df32/32.png) [@CanvasShoes](https://boards.straightdope.com/u/CanvasShoes)\ **Post date:** [August 5, 2010, 4:02am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/285 "2010-08-05T04:02:03Z")
She’s gorgeous. I’m so sorry. These tshirts, will there be a link here at the dope? ---
**Author:** ![Clockwork\_Jackal](https://avatars.discourse-cdn.com/v4/letter/c/b5e925/32.png) [@Clockwork\_Jackal](https://boards.straightdope.com/u/Clockwork_Jackal)\ **Post date:** [August 5, 2010, 4:20am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/286 "2010-08-05T04:20:55Z")
Ok, this thread made me de-lurk for the first time in…um…years? She is an absolutely gorgeous little baby. I’m a mom of a 5 month old boy, his name is Alex, and I can’t imagine…I can’t even imagine… Please know that you, your wife, and Little Owl are in my thoughts and prayers. I would love to buy a t-shirt, Chessic. Please let me (and the rest of us here) know when/how they’ll be available! ---
**Author:** ![Hokkaido\_Brit](https://avatars.discourse-cdn.com/v4/letter/h/d26b3c/32.png) [@Hokkaido\_Brit](https://boards.straightdope.com/u/Hokkaido_Brit)\ **Post date:** [August 5, 2010, 4:41am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/287 "2010-08-05T04:41:58Z")
I too am so sorry to hear your news. I have signed up to your little owl’s Caringbridge page and will keep you in my heart as you go through this. ---
**Author:** ![Triskadecamus](https://avatars.discourse-cdn.com/v4/letter/t/b19c9b/32.png) [@Triskadecamus](https://boards.straightdope.com/u/Triskadecamus)\ **Post date:** [August 5, 2010, 4:48am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/288 "2010-08-05T04:48:50Z")
Slogan for your tee shirt: “I’m smiling, you should too.” Prayers for your family. Tris ---
**Author:** ![BaneSidhe](https://avatars.discourse-cdn.com/v4/letter/b/c5a1d2/32.png) [@BaneSidhe](https://boards.straightdope.com/u/BaneSidhe)\ **Post date:** [August 5, 2010, 4:52am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/289 "2010-08-05T04:52:03Z")
Prayers and hugs to your family. ---
**Author:** ![Lacunae\_Matata](https://avatars.discourse-cdn.com/v4/letter/l/8491ac/32.png) [@Lacunae\_Matata](https://boards.straightdope.com/u/Lacunae_Matata)\ **Post date:** [August 5, 2010, 5:00am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/290 "2010-08-05T05:00:41Z")
I’ve peeked at this thread over and over again, and read as much as I could stand each time, and cried with/for you over and over again. If there were anything I could say that I thought would improve the situation, I would do so. Since I can’t… {{{{{hugs}}}}} I wish you joy in the moments that you will treasure with your family, and peace and acceptance for those moments that aren’t joyful. ---
**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 5, 2010, 5:49am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/291 "2010-08-05T05:49:39Z")
My heart goes out to you, **Bearflag**. May you and MrsBearflag cherish every moment that you have with LittleOwl. Oh, and I like the _Whooo loves you? I do_ slogan. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [August 5, 2010, 6:21am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/292 "2010-08-05T06:21:38Z")
Whooo loves you? I do! We like that one. ---
**Author:** ![Baron\_Greenback](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/baron_greenback/32/48_2.png) [@Baron\_Greenback](https://boards.straightdope.com/u/Baron_Greenback)\ **Post date:** [August 5, 2010, 6:32am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/293 "2010-08-05T06:32:06Z")
Your daughter is beautiful. [She really is](http://4.bp.blogspot.com/_XTzu4p3ujaE/TFCD9f4s7rI/AAAAAAAAAj4/gnzgmZIRPQ0/s1600/Getty413.jpg) ---
**Author:** ![Kricket](https://avatars.discourse-cdn.com/v4/letter/k/f14d63/32.png) [@Kricket](https://boards.straightdope.com/u/Kricket)\ **Post date:** [August 5, 2010, 7:09am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/294 "2010-08-05T07:09:48Z")
Keeping your family in my thoughts. Thank you for keeping us all updated. From personal knowledge having an ill child puts stress on marriages so please take time out for each other as well. ~hugs~ ---
**Author:** ![kambuckta](https://avatars.discourse-cdn.com/v4/letter/k/53a042/32.png) [@kambuckta](https://boards.straightdope.com/u/kambuckta)\ **Post date:** [August 5, 2010, 11:23am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/295 "2010-08-05T11:23:29Z")
**Bearflag** (or anybody else in the know), has a PayPal account been set up yet? I’m normally pretty loathe to donate to people hitting hard times on the SDMB, mostly because I’m normally in pretty dire straits myself!! 😃 But your little girl needs her folks beside her giving her cuddles, and not stressing about shit like paying the bills. It only takes a little bit from a lot of people to make a difference. And I’m a bit flush this week so youse got lucky!! 😛 So, gimme the details. ---
**Author:** ![interface2x](https://avatars.discourse-cdn.com/v4/letter/i/c0e974/32.png) [@interface2x](https://boards.straightdope.com/u/interface2x)\ **Post date:** [August 5, 2010, 1:18pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/296 "2010-08-05T13:18:22Z")
Pretty much everything you need to send money is in [this](http://boards.straightdope.com/sdmb/showpost.php?p=12756703&postcount=219) post. It’s a pretty easy process, but if you have any questions, feel free to post them here. ---
**Author:** ![tinkeroni](https://avatars.discourse-cdn.com/v4/letter/t/45deac/32.png) [@tinkeroni](https://boards.straightdope.com/u/tinkeroni)\ **Post date:** [August 5, 2010, 3:00pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/297 "2010-08-05T15:00:19Z")
> [@Bearflag70](#): > > > [@tinkeroni](#): > > > > [www.caringbridge.org](http://www.caringbridge.org) . > > Thank you. I was thinking about this and wondering if it is any better or worse than creating a Facebook profile for the Little Owl and updating people that way. I like it better than FB for something like this, because all of the comments are contained to the “guestbook”, and all of the journaling/updates that you do are also together, and make it much easier to read through the history and/or print up at a later date, if you so choose. I know of far too many parents who have lost children to horrible illnesses (I also know many parents who have seen their children pull through), and they find that being able to print up the journal later gives them a great sense of peace, and they can also see that there was still joy to be found in the little things that they otherwise would have forgotten amongst all the heartache. We will continue to pray for your family. ---
**Author:** ![tinkeroni](https://avatars.discourse-cdn.com/v4/letter/t/45deac/32.png) [@tinkeroni](https://boards.straightdope.com/u/tinkeroni)\ **Post date:** [August 5, 2010, 3:04pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/298 "2010-08-05T15:04:58Z")
> [@Chessic\_Sense](#): > > Anyone know how much it costs to mail a 100-shirt box from West Virginia to wherever-ville? Like, $25, you think? I have no idea how much that weighs. I don’t know if this will help in estimating, but I just sent out a box of 28 pieces of maternity clothes (including pants), and it weighed 14 lbs, and cost me $21 to send from Florida to California…parcel post. It was $40 to send it Priority… ---
**Author:** ![Minnie\_Luna](https://avatars.discourse-cdn.com/v4/letter/m/4bbf92/32.png) [@Minnie\_Luna](https://boards.straightdope.com/u/Minnie_Luna)\ **Post date:** [August 5, 2010, 4:15pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/299 "2010-08-05T16:15:26Z")
She is a beautiful baby and has a beautiful and caring family and friends surrounding her. You might not want to hear it, but you have had some good luck throughout this. You are so very lucky to have gotten the FSMA support so quickly and you are also so very lucky to get a diagnosis so quickly. I have a friend whose child was lost in the land of the undiagnosed for two years before they figured out what he has. (Technically, he still doesn’t have a diagnosis, just an unnamed “mitochondrial disorder”, but it really helped his mother that they could at least pin-point part of what his problem is.) You are lucky your pediatrician also recognized and valued your concerns and sent you ASAP to a qualified specialist. I don’t know that many other parents and doctors would be so quick to realize that there really was a problem. You have also educated yourselves very quickly and are facing the future straight on and are asking for help when you need it. That is a very brave thing to do. Now, get that kid fitted for a SCUBA mask and put her in the tub! ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [August 5, 2010, 4:20pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/300 "2010-08-05T16:20:06Z")
> [@tinkeroni](#): > > > [@Bearflag70](#): > > > > Thank you. I was thinking about this and wondering if it is any better or worse than creating a Facebook profile for the Little Owl and updating people that way. > > I like it better than FB for something like this, because all of the comments are contained to the “guestbook”, and all of the journaling/updates that you do are also together, and make it much easier to read through the history and/or print up at a later date, if you so choose. I know of far too many parents who have lost children to horrible illnesses (I also know many parents who have seen their children pull through), and they find that being able to print up the journal later gives them a great sense of peace, and they can also see that there was still joy to be found in the little things that they otherwise would have forgotten amongst all the heartache. > > We will continue to pray for your family. We also went with caringbridge because not everyone has or wants Facebook. Also, you need an account to use Facebook but only a link is needed for caringbridge. I don’t want to be asking people to create FB accounts if they want to follow along. We also decided not to solicit our personal Little Owl funds on caringbridge. It seems tacky. The donation link on caringbridge is a donation to caringbridge, not to us. Also, thank you all again for everything. I can’t possibly thank everyone individually, as much as I would like to. [Previous page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=14) [Next page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=16)