# 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:** 27
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [October 2, 2010, 6:37pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/521 "2010-10-02T18:37:03Z")
Cuteness alert! A real life [owl hat](http://www.hoydenabouttown.com/20100913.8621/owl-in-a-hat/). ---
**Author:** ![MoodIndigo1](https://avatars.discourse-cdn.com/v4/letter/m/e8c25b/32.png) [@MoodIndigo1](https://boards.straightdope.com/u/MoodIndigo1)\ **Post date:** [October 2, 2010, 6:42pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/522 "2010-10-02T18:42:42Z")
I thought you were going to post a link to the latest pic of your Owlet in her owl outfit. Cuteness overload there too. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [October 2, 2010, 6:53pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/523 "2010-10-02T18:53:28Z")
> [@MoodIndigo1](#): > > I thought you were going to post a link to the latest pic of your Owlet in her owl outfit. Cuteness overload there too. Halloween ---
**Author:** ![Auntbeast](https://avatars.discourse-cdn.com/v4/letter/a/5f9b8f/32.png) [@Auntbeast](https://boards.straightdope.com/u/Auntbeast)\ **Post date:** [October 2, 2010, 9:48pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/524 "2010-10-02T21:48:57Z")
Bearflag70 First of all, my heart goes out to you. While I was reading this thread, my daughter came over an crawled in my lap. She doesn’t do that very often. Secondly, the two states I’ve lived in since my daughter was born both had programs for children 0-3 years old. In Florida, it was called Baby Steps, in Georgia, Babies Can’t Wait. Essentially it is a state funded program that exists to intervene in matters of infant health/well being. My daughter was diagnosed with a significant speech delay. I had full coverage insurance. The insurance only covered 6 therapy sessions and there was a 4 month wait for an evaluation. When I found Baby Steps, they were mandated to provide care within 30 days. It is not based on income. They don’t give a crap if you have insurance, their job is to help the kids. I have no doubt that your daughter would fall under their criteria. I’ve searched the California Public Health site and couldn’t find the program. However, I have the number of the woman who helped start the Babies Can’t Wait program in Georgia and will find out if she can put me in touch with someone in California, or at least get the name of the program. To put it in perspective, while my full coverage insurance would cover 6 therapy sessions, Baby Steps provided weekly therapy sessions at my home, full evaluations and transitioned my daughter into the school system when she turned 3. I know they deal with much more serious issues than we had. I’ll report back when I have more information. Found it. [http://www.dds.ca.gov/EarlyStart/ResourceMaterials.cfm](http://www.dds.ca.gov/EarlyStart/ResourceMaterials.cfm) ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [October 3, 2010, 4:25am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/525 "2010-10-03T04:25:14Z")
Thanks for the link! [Here’s the email exchange](http://www.gwendolynstrong.com/2010/10/doing-the-right-thing-leads-to-two-20k-grants-read-more.html) between Cookies and GSF. ---
**Author:** ![lorene](https://avatars.discourse-cdn.com/v4/letter/l/65b543/32.png) [@lorene](https://boards.straightdope.com/u/lorene)\ **Post date:** [October 4, 2010, 1:46pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/526 "2010-10-04T13:46:04Z")
> [@Gestalt](#): > > > [@Bearflag70](#): > > > > [New Little Owl Photo](http://www.flickr.com/photos/53374705@N06/5040191765/) > > Her cheeks are quite nommable. I would have to exercise great restraint around her 🙂 I would not bother with restraint. I would nom, nom, and nom some more. 😉 ---
**Author:** ![IvoryTowerDenizen](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/ivorytowerdenizen/32/17937_2.png) [@IvoryTowerDenizen](https://boards.straightdope.com/u/IvoryTowerDenizen)\ **Post date:** [October 4, 2010, 4:21pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/527 "2010-10-04T16:21:38Z")
Have you seen this article? It’s about a local (to us) boy with SMA I who actually can spend time with an in Kindergarten a few hours a week. He’s sick, no doubt, but learning and living. [http://www.wtnh.com/dpp/news/health/boy-with-rare-genetic-disorder-living-learning-beating-the-odds](http://www.wtnh.com/dpp/news/health/boy-with-rare-genetic-disorder-living-learning-beating-the-odds) ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [October 14, 2010, 5:39pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/528 "2010-10-14T17:39:51Z")
Here’s the Getty Crafty craft fair fundraiser segment on [Good Day Sacramento](http://gooddaysacramento.com/videolibrary?articleID=78859)! Maggots n’ Poo! ---
**Author:** ![Infovore](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/infovore/32/420_2.png) [@Infovore](https://boards.straightdope.com/u/Infovore)\ **Post date:** [October 14, 2010, 6:02pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/529 "2010-10-14T18:02:03Z")
> [@Bearflag70](#): > > Here’s the Getty Crafty craft fair fundraiser segment on [Good Day Sacramento](http://gooddaysacramento.com/videolibrary?articleID=78859)! > > Maggots n’ Poo! Very cool! Glad it went well! Is there any place where they list all the crafters who were there? The reporter said you could order stuff online, and I really like that gray knitted hat with the steampunk looking goggles that was displayed by the first exhibitor they talked to (the one who also had the football hat). They mentioned there was a list somewhere on the site, but I couldn’t find it. Loved the maggots and poo! ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [October 14, 2010, 6:38pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/530 "2010-10-14T18:38:11Z")
[GEtty Crafty vendors list with links](http://gettyowl.com/2010/10/08/and-the-vendors-are/). I couldn’t find the links either at the Good Day Sac site. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [October 14, 2010, 7:24pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/531 "2010-10-14T19:24:18Z")
[Vendor links from Good Day Sacramento](http://gooddaysacramento.com/moreshowinformation/show.information.2.1962078.html) ---
**Author:** ![Infovore](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/infovore/32/420_2.png) [@Infovore](https://boards.straightdope.com/u/Infovore)\ **Post date:** [October 14, 2010, 7:31pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/532 "2010-10-14T19:31:15Z")
> [@Bearflag70](#): > > [GEtty Crafty vendors list with links](http://gettyowl.com/2010/10/08/and-the-vendors-are/). > > I couldn’t find the links either at the Good Day Sac site. Thanks much. I found the vendor, but sadly the hat is a baby hat, so I doubt it would fit me. 🙂 ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [October 14, 2010, 7:41pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/533 "2010-10-14T19:41:26Z")
> [@Infovore](#): > > > [@Bearflag70](#): > > > > [GEtty Crafty vendors list with links](http://gettyowl.com/2010/10/08/and-the-vendors-are/). > > > > I couldn’t find the links either at the Good Day Sac site. > > Thanks much. I found the vendor, but sadly the hat is a baby hat, so I doubt it would fit me. 🙂 I’ll ask if she can do an adult hat and get a quote for you. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [October 14, 2010, 8:03pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/534 "2010-10-14T20:03:40Z")
> [@Infovore](#): > > Thanks much. I found the vendor, but sadly the hat is a baby hat, so I doubt it would fit me. 🙂 Check your PM. ---
**Author:** ![MoodIndigo1](https://avatars.discourse-cdn.com/v4/letter/m/e8c25b/32.png) [@MoodIndigo1](https://boards.straightdope.com/u/MoodIndigo1)\ **Post date:** [October 15, 2010, 11:58pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/535 "2010-10-15T23:58:55Z")
Hope the craft fair is a success tomorrow. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [October 16, 2010, 5:45am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/536 "2010-10-16T05:45:42Z")
[We made the local news tonight](http://www.fox40.com/videobeta/a97529d4-dfe3-44b5-a68d-e481cac7a7ff/News/Sacramento-Baby-Strugges-With-Rare-Muscle-Disease). ---
**Author:** ![MoodIndigo1](https://avatars.discourse-cdn.com/v4/letter/m/e8c25b/32.png) [@MoodIndigo1](https://boards.straightdope.com/u/MoodIndigo1)\ **Post date:** [October 16, 2010, 6:42am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/537 "2010-10-16T06:42:50Z")
Kate, you, your friends: you’ve done amazing work getting all sorts of projects under way-- and even getting your message out in the news! WTG Cool seeing all 3 of you live. I hope there’s a huge turnout tomorrow. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [October 16, 2010, 6:56am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/538 "2010-10-16T06:56:44Z")
They moved the video link. [Here it is](http://www.fox40.com/videobeta/29ac4159-067a-4a6f-aebc-09af20c79763/News/Sacramento-Baby-Battles-Against-Muscle-Disorder-SMA). ---
**Author:** ![FriarTed](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/friarted/32/1052_2.png) [@FriarTed](https://boards.straightdope.com/u/FriarTed)\ **Post date:** [October 16, 2010, 12:25pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/539 "2010-10-16T12:25:56Z")
> [@Bearflag70](#): > > They moved the video link. [Here it is](http://www.fox40.com/videobeta/29ac4159-067a-4a6f-aebc-09af20c79763/News/Sacramento-Baby-Battles-Against-Muscle-Disorder-SMA). There was her little Bert laugh again! ---
**Author:** ![janis\_and\_c0](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/janis_and_c0/32/21_2.png) [@janis\_and\_c0](https://boards.straightdope.com/u/janis_and_c0)\ **Post date:** [October 16, 2010, 2:46pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/540 "2010-10-16T14:46:17Z")
That was a lovely segment, Got something in my eye… Hope GETty Crafty is a smashing success today! [Previous page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=26) [Next page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=28)