# 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:** 52
**Author:** ![Yllaria](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/yllaria/32/3452_2.png) [@Yllaria](https://boards.straightdope.com/u/Yllaria)\ **Post date:** [March 30, 2017, 3:11pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1021 "2017-03-30T15:11:54Z")
Good luck with the treatment and Happy Birthday! ---
**Author:** ![PunditLisa](https://avatars.discourse-cdn.com/v4/letter/p/4af34b/32.png) [@PunditLisa](https://boards.straightdope.com/u/PunditLisa)\ **Post date:** [March 30, 2017, 11:29pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1022 "2017-03-30T23:29:50Z")
Hope is a great thing. Wishing your family a wonder filled 2017. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [March 31, 2017, 6:36pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1023 "2017-03-31T18:36:14Z")
> [@Lochdale](#): > > Terrific news. > > So assuming that this treatment works, what is Getty’s prognosis? Unknown. One of the biggest factors in treating SMA is early intervention. Get the treatment going before motor neurons start failing and dying off. Getty is an “older type 1” and for treatment impacts, we will just have to watch and hope for the best. The hope is that her existing motor neurons will get a boost, allowing for a better signal and more muscle control and strength. To the extent some motor neurons are not quite dead, we hope they can be salvaged, which could result in some gains. For motor neurons that have permanently failed due to her age, we expect nothing. Realistically, we hope for two things: (1) halting progression of weakness; and (2) some additional head, jaw, mouth, hand, wrist, respiratory, and foot strength, and some additional leg and arm movement and endurance and postural strength would be awesome. We are excited for her opportunity but don’t want to get too caught up in wishful thinking. Simply halting progression would be great! Sent from my iPhone using Tapatalk ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [March 31, 2017, 6:43pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1024 "2017-03-31T18:43:26Z")
> [@StGermain](#): > > **Bearflag** - How long before you should start to see improvements? > > StG We think we have seen minor improvements after one dose. With her hand laying flat on her belly, she can usually lift her index and middle fingers. After the first dose, she was getting some wrist lift. Also, her jaw seems to be more mobile; she was wiggling it around more than usual. Sent from my iPhone using Tapatalk ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [March 31, 2017, 6:46pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1025 "2017-03-31T18:46:57Z")
> [@Bearflag70](#): > > We think we have seen minor improvements after one dose. With her hand laying flat on her belly, she can usually lift her index and middle fingers. After the first dose, she was getting some wrist lift. Also, her jaw seems to be more mobile; she was wiggling it around more than usual. > Sent from my iPhone using Tapatalk Those apparent gains are subtle nuances we can see because we know her so well. On the other hand, we realize we could be biased by wishful thinking and we are recording things we think could be improvements. Sent from my iPhone using Tapatalk ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [March 31, 2017, 6:51pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1026 "2017-03-31T18:51:44Z")
> [@Bearflag70](#): > > Those apparent gains are subtle nuances we can see because we know her so well. On the other hand, we realize we could be biased by wishful thinking and we are recording things we think could be improvements. > Sent from my iPhone using Tapatalk I should probably document her abilities over time with various isolated joint movements under controlled conditions. Sent from my iPhone using Tapatalk ---
**Author:** ![Sunny\_Daze](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/sunny_daze/32/438_2.png) [@Sunny\_Daze](https://boards.straightdope.com/u/Sunny_Daze)\ **Post date:** [March 31, 2017, 8:01pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1027 "2017-03-31T20:01:20Z")
Thinking good thoughts that you are seeing real improvements. Documenting what you see is a great idea. Maybe write down what you know now about her abilities, then keep track on a regular schedule, so you’ll have something to measure her progress. Best wishes to you all. ---
**Author:** ![StGermain](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/stgermain/32/2868_2.png) [@StGermain](https://boards.straightdope.com/u/StGermain)\ **Post date:** [March 31, 2017, 8:17pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1028 "2017-03-31T20:17:14Z")
I think documenting is a great idea, particularly if you may have to fight with your insurance to continue treatment. If you show positive gains, they’re more likely to approve it. StG ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [April 1, 2017, 12:41am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1029 "2017-04-01T00:41:14Z")
> [@StGermain](#): > > I think documenting is a great idea, particularly if you may have to fight with your insurance to continue treatment. If you show positive gains, they’re more likely to approve it. > > StG Word is now that they will establish baselines and monitor results to justify continued use. Sent from my iPhone using Tapatalk ---
**Author:** ![Merneith](https://avatars.discourse-cdn.com/v4/letter/m/57b2e6/32.png) [@Merneith](https://boards.straightdope.com/u/Merneith)\ **Post date:** [April 1, 2017, 1:19am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1030 "2017-04-01T01:19:38Z")
> [@Bearflag70](#): > > I should probably document her abilities over time with various isolated joint movements under controlled conditions. > Sent from my iPhone using Tapatalk Yes, indeed. I’m sure the results will add immeasurably to our understanding of this potential treatment. ---
**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:** [March 25, 2018, 9:40pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1031 "2018-03-25T21:40:15Z")
**Happy Birthday Getty Owl!!** A joyous 8th Birthday to you, precious one! So happy to celebrate with you today!! ---
**Author:** ![Typo\_Knig](https://avatars.discourse-cdn.com/v4/letter/t/cdc98d/32.png) [@Typo\_Knig](https://boards.straightdope.com/u/Typo_Knig)\ **Post date:** [March 25, 2018, 9:49pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1032 "2018-03-25T21:49:50Z")
The is the best news ever!! I’ve got to go full Roger Daltrey [- YouTube](https://youtu.be/ekQtShe8954) ---
**Author:** ![dogbutler](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dogbutler/32/428_2.png) [@dogbutler](https://boards.straightdope.com/u/dogbutler)\ **Post date:** [March 25, 2018, 10:16pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1033 "2018-03-25T22:16:33Z")
HAPPY BIRTHDAY **GETTY OWL**!!! I’m always glad to see happy milestones in this thread. ---
**Author:** ![Sunny\_Daze](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/sunny_daze/32/438_2.png) [@Sunny\_Daze](https://boards.straightdope.com/u/Sunny_Daze)\ **Post date:** [March 25, 2018, 11:04pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1034 "2018-03-25T23:04:24Z")
**Happy Birthday Getty**!! ---
**Author:** ![kambuckta](https://avatars.discourse-cdn.com/v4/letter/k/53a042/32.png) [@kambuckta](https://boards.straightdope.com/u/kambuckta)\ **Post date:** [March 26, 2018, 3:18am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1035 "2018-03-26T03:18:17Z")
HAPPY BIRTHDAY MISS GETTY. Hope you have a wonderful day. Fancy you being 8 already!! WOOOO HOOOO :):):):)🙂 ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [March 26, 2018, 4:51am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1036 "2018-03-26T04:51:16Z")
Thank you all! It’s been quite a ride. Our lives are totally different now than 2010. She’s a happy kid and that’s what matters most. Sent from my iPhone using Tapatalk ---
**Author:** ![StGermain](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/stgermain/32/2868_2.png) [@StGermain](https://boards.straightdope.com/u/StGermain)\ **Post date:** [March 26, 2018, 1:56pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1037 "2018-03-26T13:56:06Z")
How’s the Spinraza doing for her? StG ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [March 26, 2018, 6:16pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1038 "2018-03-26T18:16:10Z")
> [@StGermain](#): > > How’s the Spinraza doing for her? > > StG Good, thanks! She seems to have recovered a bit more strength in hands, feet, and hips… not a full point on the CHOP INTEND scale, but we weren’t expecting that kind of progress. Preventing further decline is progress. Sent from my iPhone using Tapatalk ---
**Author:** ![JRDelirious](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/jrdelirious/32/9531_2.png) [@JRDelirious](https://boards.straightdope.com/u/JRDelirious)\ **Post date:** [March 26, 2018, 6:28pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1039 "2018-03-26T18:28:55Z")
> [@Bearflag70](#): > > Thank you all! It’s been quite a ride. Our lives are totally different now than 2010. She’s a happy kid and that’s what matters most. Yes, yes, that IS what matters most. Good to hear that the treatment is having favorable result, here’s to the Owl and to her folks! ---
**Author:** ![Quartz](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/quartz/32/267_2.png) [@Quartz](https://boards.straightdope.com/u/Quartz)\ **Post date:** [March 26, 2018, 10:28pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/1040 "2018-03-26T22:28:19Z")
Good heavens, 8 years already! Happy birthday! [Previous page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=51) [Next page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=53)