# 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:** 9
**Author:** ![Crowbar\_of\_Irony\_3](https://avatars.discourse-cdn.com/v4/letter/c/f08c70/32.png) [@Crowbar\_of\_Irony\_3](https://boards.straightdope.com/u/Crowbar_of_Irony_3)\ **Post date:** [August 2, 2010, 8:37am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/161 "2010-08-02T08:37:53Z")
I’m am so sorry for you and your child. Please hang in there. ---
**Author:** ![DragonAsh](https://avatars.discourse-cdn.com/v4/letter/d/db5fbb/32.png) [@DragonAsh](https://boards.straightdope.com/u/DragonAsh)\ **Post date:** [August 2, 2010, 8:40am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/162 "2010-08-02T08:40:36Z")
7-month old son here, and we can’t even imagine how you’re coping with this. You’re in our thoughts, DA ---
**Author:** ![irishgirl](https://avatars.discourse-cdn.com/v4/letter/i/8edcca/32.png) [@irishgirl](https://boards.straightdope.com/u/irishgirl)\ **Post date:** [August 2, 2010, 10:12am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/163 "2010-08-02T10:12:21Z")
You’re in my thoughts and prayers. Cuddle your baby and give her everything you can, for however long that may be. ---
**Author:** ![Cisco](https://avatars.discourse-cdn.com/v4/letter/c/ccd318/32.png) [@Cisco](https://boards.straightdope.com/u/Cisco)\ **Post date:** [August 2, 2010, 10:28am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/164 "2010-08-02T10:28:43Z")
> [@Bearflag70](#): > > 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. This is just gut-wrenching. We have a 17-month old, and we did the same thing when he was a “baby burrito” (that’s how we refer to his early days, when we swaddled him like a burrito.) Knowing we would lose him soon would be unbearable. I am SO sorry, Bearflag. I hope you get some good news soon. I really do. ---
**Author:** ![Dung\_Beetle](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dung_beetle/32/7945_2.png) [@Dung\_Beetle](https://boards.straightdope.com/u/Dung_Beetle)\ **Post date:** [August 2, 2010, 2:11pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/165 "2010-08-02T14:11:20Z")
If the tears of strangers could heal your daughter, we’d have forced the universe to take this back. I am so sorry. ---
**Author:** ![drillrod](https://avatars.discourse-cdn.com/v4/letter/d/b487fb/32.png) [@drillrod](https://boards.straightdope.com/u/drillrod)\ **Post date:** [August 2, 2010, 2:29pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/166 "2010-08-02T14:29:14Z")
My heart goes out to you and your family. ---
**Author:** ![Shirley\_Ujest](https://avatars.discourse-cdn.com/v4/letter/s/45deac/32.png) [@Shirley\_Ujest](https://boards.straightdope.com/u/Shirley_Ujest)\ **Post date:** [August 2, 2010, 2:45pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/167 "2010-08-02T14:45:11Z")
> [@Dung\_Beetle](#): > > If the tears of strangers could heal your daughter, we’d have forced the universe to take this back. . This is beautiful. I cannot add to anything that hasn’t been expressed here more eloquently. You and your wife are in my thoughts. ---
**Author:** ![Mean\_Mr.Mustard](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/mean_mr.mustard/32/3865_2.png) [@Mean\_Mr.Mustard](https://boards.straightdope.com/u/Mean_Mr.Mustard)\ **Post date:** [August 2, 2010, 2:47pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/168 "2010-08-02T14:47:46Z")
> [@Bearflag70](#): > > 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. This may be the most heartbreaking - yet the most wonderful - thing I’ve ever read. Owl doesn’t know that she is ill; what she does know is that it’s fun to have these two big people love her enough to spin her limbs 'round and 'round. Wishing all of you strength. mmm ---
**Author:** ![multimediac17](https://avatars.discourse-cdn.com/v4/letter/m/839c29/32.png) [@multimediac17](https://boards.straightdope.com/u/multimediac17)\ **Post date:** [August 2, 2010, 3:16pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/169 "2010-08-02T15:16:56Z")
I’ve been writing and erasing things but cannot put into words much more than I’m so sorry, and that your family is in my thoughts. I’m glad to hear you’re cherishing every moment and remembering to never give up hope. No matter what happens to your baby the love you give her now will keep going forever. ---
**Author:** ![Edward\_The\_Head](https://avatars.discourse-cdn.com/v4/letter/e/ce73a5/32.png) [@Edward\_The\_Head](https://boards.straightdope.com/u/Edward_The_Head)\ **Post date:** [August 2, 2010, 3:17pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/170 "2010-08-02T15:17:47Z")
I’ve got a four and two year old and the thought of losing either of them makes me sick. Why the fuck does life have to come by and just give you a swift kick in the balls every so often? ---
**Author:** ![Mona\_Lisa\_Simpson](https://avatars.discourse-cdn.com/v4/letter/m/ce7236/32.png) [@Mona\_Lisa\_Simpson](https://boards.straightdope.com/u/Mona_Lisa_Simpson)\ **Post date:** [August 2, 2010, 3:23pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/171 "2010-08-02T15:23:43Z")
hugs. I have nothing to add except my heartfelt sympathy. I have to go hug my boy now. ---
**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 2, 2010, 3:34pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/172 "2010-08-02T15:34:39Z")
So sorry. I wish words could heal the pain. Use all the support systems offered to you, even if you feel you don’t need it at the time. I hope the little owl gets stronger and is able to fight. ---
**Author:** ![Nawth\_Chucka](https://avatars.discourse-cdn.com/v4/letter/n/c57346/32.png) [@Nawth\_Chucka](https://boards.straightdope.com/u/Nawth_Chucka)\ **Post date:** [August 2, 2010, 3:39pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/173 "2010-08-02T15:39:21Z")
Bearflag and Family, I’m so sorry for your pain and unbearable frustration right now. There are many children who survive for years w/ SMA consuming nothing but breastmilk; you may have already heard about that but I want to share w/ you the [blog](http://www.our-sma-angels.com/fortheloveofjake/) of one family doing just that to keep their son alive. Thank you for sharing all your experiences w/ us so we can learn to understand, support and appreciate those around us more fully. ---
**Author:** ![Ellen\_Cherry](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/ellen_cherry/32/3600_2.png) [@Ellen\_Cherry](https://boards.straightdope.com/u/Ellen_Cherry)\ **Post date:** [August 2, 2010, 3:49pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/174 "2010-08-02T15:49:01Z")
Bearflag, I’m so very sorry. I will offer prayers for your little owl, and for you and your wife too. I’ve been where you are. If you want to talk, just let me know. Ellen ---
**Author:** ![lieu](https://avatars.discourse-cdn.com/v4/letter/l/c2a13f/32.png) [@lieu](https://boards.straightdope.com/u/lieu)\ **Post date:** [August 2, 2010, 4:38pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/175 "2010-08-02T16:38:02Z")
Friend **Bearflag** , my sincere sympathies for this most unwelcome news. _“All we can really do is love our little owl and each other as much as possible each day.”_ Peace and comfort to all your family. ---
**Author:** ![Chessic\_Sense](https://avatars.discourse-cdn.com/v4/letter/c/7c8e57/32.png) [@Chessic\_Sense](https://boards.straightdope.com/u/Chessic_Sense)\ **Post date:** [August 2, 2010, 4:49pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/176 "2010-08-02T16:49:12Z")
How’s the money situation, **BearFlag**? Still think there will be problems? I’m sure there’s something we can do. Hell, we raised $5,000 once just to pay someone’s electric bill. ---
**Author:** ![jjimm](https://avatars.discourse-cdn.com/v4/letter/j/ba8739/32.png) [@jjimm](https://boards.straightdope.com/u/jjimm)\ **Post date:** [August 2, 2010, 5:05pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/177 "2010-08-02T17:05:56Z")
> [@Dan\_Turk](#): > > I have a friend with SMA. The docs said he wouldn’t make it past age three - they were off by quite a bit. He’s married, has two bachelor’s degrees and a full-time job. I know there are varying degrees and types, but since he was given the same prediction as your daughter, all may not be lost. I wanted to add that I went to school with a girl with SMA. Her prognosis was about seven or eight years. When she was a teenager I helped her with a typing system for her computer. I don’t know where she is now, but the last I heard about her, about five years ago when she was in her thirties, was that she had become a lawyer and got married. I know false hope can be counterproductive, but I still want to give you another datapoint that defied the predictions. Thinking of you. ---
**Author:** ![wonky](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/wonky/32/393_2.png) [@wonky](https://boards.straightdope.com/u/wonky)\ **Post date:** [August 2, 2010, 5:09pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/178 "2010-08-02T17:09:20Z")
> [@TruCelt](#): > > And remember that being strong doesn’t mean refusing to cry or face the pain; it means choosing to love and be loved, even when you know it’s going to hurt in the end. Surround her with love, you won’t regret it. Beautiful words to live by. Love brings the most pain and the most joy of anything we can do. What’s important is to remember that it’s worth it. It’s worth it. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [August 2, 2010, 5:14pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/179 "2010-08-02T17:14:45Z")
> [@Chessic\_Sense](#): > > How’s the money situation, **BearFlag**? Still think there will be problems? I’m sure there’s something we can do. Hell, we raised $5,000 once just to pay someone’s electric bill. My wife says she cannot go back to work when school starts in a few weeks. The school admin is ware and is looking into options and benefits. All sick and vacation hours were spent at birth because the district only gives 2 days maternity leave. We are thinking about my wife doing some kind of We don’t know yet what the financial options are. We do know that anything much less that a full paycheck from my wife is not sustainable and we will default on something. We have come to the conclusion that if our situation means defaulting/bankruptcy, then so be it. We will do what we can to eat, hang onto the house, keep the utilities on, keep auto insurance, and keep my business afloat. Her auto loan, our credit cards, our student loans, and other non-essentials are just that … non-essential. Even the house is non-essential if it really comes down to it, but I can’t imagine moving in the middle of all this. A friend has offered to host some fundraisers to supplement our income. We are considering taking her up on it. ---
**Author:** ![Chessic\_Sense](https://avatars.discourse-cdn.com/v4/letter/c/7c8e57/32.png) [@Chessic\_Sense](https://boards.straightdope.com/u/Chessic_Sense)\ **Post date:** [August 2, 2010, 5:20pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/180 "2010-08-02T17:20:18Z")
> [@Bearflag70](#): > > We are considering taking her up on it. “Considering”? Nah, man. TAKE IT. It’s just money. Your friend won’t miss it. Let’s talk dollars and cents here. How much income needs replaced? What’s your wife’s monthly income? [Previous page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=8) [Next page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=10)