# 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:** 10
**Author:** ![Mama\_Zappa](https://avatars.discourse-cdn.com/v4/letter/m/71e660/32.png) [@Mama\_Zappa](https://boards.straightdope.com/u/Mama_Zappa)\ **Post date:** [August 2, 2010, 5:21pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/181 "2010-08-02T17:21:28Z")
Do take advantage of the friend’s offer - you’re looking at a lot of medical bills, caregiver bills etc. If possible, try to keep the car paid up - you’ll both need transportation. Ditto house (you need a place to live and you don’t need the hassle of moving under duress). Credit cards etc. can go to hell. Depending on how your daughter is doing, your wife might try to see if she can go to work now (if at all possible, I know with the ton of bricks you have had dumped on you she genuinely may not be up for it). My thinking is that if she can work now, at least some, then she’ll have more flexibility for times when Baby Owl is sicker. ---
**Author:** ![PeskiPiksi](https://avatars.discourse-cdn.com/v4/letter/p/e495f1/32.png) [@PeskiPiksi](https://boards.straightdope.com/u/PeskiPiksi)\ **Post date:** [August 2, 2010, 5:22pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/182 "2010-08-02T17:22:56Z")
> [@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. I like this idea–I’d be glad to donate what I can. At least then I could feel like I was doing something, even if it’s just a \*little \*something, to help. ---
**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, 5:23pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/183 "2010-08-02T17:23:06Z")
> [@jjimm](#): > > > [@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. Thank you. It sounds like Type 2, which is less severe and has a longer life expectancy. Current indicators point to Type 1 in our case, which is most severe. My understanding so far is that the three types of SMA are based upon performance: Type 1: Unable to support own weight when sitting Type 2: Able to support own weight when sitting but unable to walk Type 3: Able to walk, although that ability may be lost at some point When we put our girl in a sitting position, stabilize her, and let go, she just flops over. I don’t know how much of that she should be able to do at 4 months, but the current thought is Type 1 with a life expectancy of anywhere from a few months to 2 years. There are Type 3 people who live well into adulthood. ---
**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, 5:29pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/184 "2010-08-02T17:29:39Z")
My wife needs to be “on” and focused all day in front of high school kids and does not have the luxury of being able to leave the room or break down crying in the middle of class. She doesn’t think she can do it. In the back of her mind, by being at work, she will feel like she is abandoning her sick child at a time of need. there’s no way she can get through the day like that. ---
**Author:** ![Smeghead](https://avatars.discourse-cdn.com/v4/letter/s/f1d935/32.png) [@Smeghead](https://boards.straightdope.com/u/Smeghead)\ **Post date:** [August 2, 2010, 5:34pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/185 "2010-08-02T17:34:02Z")
> [@Bearflag70](#): > > 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. Absolutely. One of the first things I thought when I heard about your situation is that I’d quit everything to spend all the time I could with her if I were you. I like the fundraising idea. As my dad said last time I moaned to him about trying to fund grad school, “It’s only _money_. There are a lot of things more important than that.” ---
**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, 5:42pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/186 "2010-08-02T17:42:47Z")
As far as taking up the fundraiser offer, we need a specific diagnosis with blood work first. We need a specific prognosis based upon the hard facts before we consider taking up any kind of fundraiser. We need to assess our financial needs and determine what our revenue options are by way of alternative work options, school district benefits, government benefits, and charitable organizations. Apparently the district does allow sick and vacation day donations. We won’t solicit that kind of donation but word will get around and some teachers will probably donate something. After doing all that, we can calculate the the financial shortfall and assess accordingly. Her monthly take-home pay is roughly $4,200.00, which includes some extra pay for doing things beyond her base contract work. ---
**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, 5:45pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/187 "2010-08-02T17:45:28Z")
> [@Bearflag70](#): > > > [@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 That got cut off somehow. We are thinking about my wife doing some kind of home schooling or tutoring option as a revenue alternative. ---
**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, 5:47pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/188 "2010-08-02T17:47:05Z")
As far as medical bills, we have Kaiser, which is pretty damn comprehensive. I understand there may be Medicare options for terminally ill home care, but I don’t know. ---
**Author:** ![Silver\_Fire](https://avatars.discourse-cdn.com/v4/letter/s/a88e4f/32.png) [@Silver\_Fire](https://boards.straightdope.com/u/Silver_Fire)\ **Post date:** [August 2, 2010, 5:58pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/189 "2010-08-02T17:58:48Z")
Fundraisers are a snap to put together, so don’t feel like your friend would have to take on this huge burden. Not even remotely close to the same thing, but I’m helping a friend with his campaign for county sheriff and we’ve used Facebook for most of what we’ve accomplished. Friends of friends of friends can get the word out pretty quickly and if I have managed to get as many donations as I have for a _candidate for sheriff_ (silent auction items, including gifts certificates from local business; venues for events, like the pig roast we had (donated pig, the butcher donated his time, etc.); bands to play; straight dollars), I’m sure with the help of friends and family, you guys could find a bunch of people to help you in a hundred different ways. Neighborhood ladies hosting bake sales, people making meals for your family, those decorated cans you always see on gas station counters with a brief description of what’s up asking for money help. Take whatever help you can get. There’s no shame in it, not even a little bit. I personally like the idea of a silent auction because you can’t really feel like you’re putting anybody out. Businesses like donating gift certs and other services because it’s advertising, the potential to gain a new customer (and more because of word of mouth), and it doesn’t really cost them anything. The people who bid are getting something in return so it’s not charity (not that there is a single thing in the world wrong with that). Plus bidding wars are fun, even for the spectators. 🙂 I wish I could be where you are because I would do this in a second. ---
**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, 6:11pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/190 "2010-08-02T18:11:11Z")
Thank you, it is a good idea. We just need to have specific medical results first. I’d hate to ask someone start planning the Little Owl SMA fundraiser only to find out that it’s not SMA. I have no shame in having a fundraiser, but only when the foundation for it is fully justified. ---
**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, 6:11pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/191 "2010-08-02T18:11:25Z")
> [@Silver\_Fire](#): > > I wish I could be where you are because I would do this in a second. Good point. Where are you, **Bearflag**? Surely some Doper is in your neighborhood and can help out physically. ---
**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, 6:22pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/192 "2010-08-02T18:22:08Z")
Sacramento, CA ---
**Author:** ![TubaDiva](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/tubadiva/32/507_2.png) [@TubaDiva](https://boards.straightdope.com/u/TubaDiva)\ **Post date:** [August 2, 2010, 6:23pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/193 "2010-08-02T18:23:59Z")
Bearflag, the easiest and least annoying way to do this is for you to have a PayPal account and let people send you donations. We’d rather do something unofficial and quiet like this but can ramp it up as appropriate. You and your family are in my thoughts and prayers in this difficult time. ---
**Author:** ![overlyverbose](https://avatars.discourse-cdn.com/v4/letter/o/9dc877/32.png) [@overlyverbose](https://boards.straightdope.com/u/overlyverbose)\ **Post date:** [August 2, 2010, 6:27pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/194 "2010-08-02T18:27:23Z")
I am so very, very sorry. I can’t even imagine what you must be going through. If you do a fundraiser, let us know about it. Hell, even if you don’t do a fundraiser, let us help somehow. Also, I generally only deal in Medicare for disabled and older individuals, but if you or your wife need help understanding Medicare, just PM me and I’ll do what I can. ---
**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, 6:27pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/195 "2010-08-02T18:27:12Z")
> [@Bearflag70](#): > > Her monthly take-home pay is roughly $4,200.00, which includes some extra pay for doing things beyond her base contract work. Of course that says nothing about the how much the shortfall will be once we determine what our other options are. ---
**Author:** ![Silver\_Fire](https://avatars.discourse-cdn.com/v4/letter/s/a88e4f/32.png) [@Silver\_Fire](https://boards.straightdope.com/u/Silver_Fire)\ **Post date:** [August 2, 2010, 6:28pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/196 "2010-08-02T18:28:53Z")
> [@Bearflag70](#): > > Thank you, it is a good idea. We just need to have specific medical results first. I’m sorry, I saw that you had already said that after I posted (I’ve been leaving reply windows open too long all day; I’m easily distra… ooh, shiny). Well, if the time comes. I do believe that people are good and will help in these types of situations however they are needed and able. It’s also a good way to get your friends, family, and community involved and it benefits them too because they won’t feel so helpless. ---
**Author:** ![Ogre](https://avatars.discourse-cdn.com/v4/letter/o/ecb155/32.png) [@Ogre](https://boards.straightdope.com/u/Ogre)\ **Post date:** [August 2, 2010, 6:29pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/197 "2010-08-02T18:29:19Z")
I have a 5 month old son. This is incredibly horrifying. I’m so sorry, Bearflag. You’re in our thoughts. ---
**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, 6:39pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/198 "2010-08-02T18:39:43Z")
Thank you all. My wife and I are crying that SDMB would even consider this. I have PayPal in my name, but should I use that or set up a separate account? ---
**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, 6:43pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/199 "2010-08-02T18:43:58Z")
If you are willing, please PM me your address. ---
**Author:** ![Ruffian](https://avatars.discourse-cdn.com/v4/letter/r/71e660/32.png) [@Ruffian](https://boards.straightdope.com/u/Ruffian)\ **Post date:** [August 2, 2010, 6:47pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/200 "2010-08-02T18:47:25Z")
> [@Bearflag70](#): > > When we put our girl in a sitting position, stabilize her, and let go, she just flops over. I don’t know how much of that she should be able to do at 4 months, but the current thought is Type 1 with a life expectancy of anywhere from a few months to 2 years. > > There are Type 3 people who live well into adulthood. At 4 months, \*very \*few infants can sit up on their own without some sort of support. Rolling over is the big milestone at that age. Both of my boys weren’t sitting unsupported until about 6 1/2 months (Boy 2.0 was nearly 7mos)–for both of them, when we did their first professional portraits at 6mos and they were posed sitting, I had duck behind them to hold them off camera. I don’t want to be dismissive or misleading or overstep bounds or offer false hope. But, I just wanted to say (in the spirit of the Dope, perhaps) that sitting up unsupported at this age is exceedingly unlikely. I understand how your wife cannot take the breaks she will need emotionally. I teach middle school, and know what a pain it is even to get to the bathroom during nonschedule breaks. Once you have an official diagnosis and word gets out among staff and students, I’m sure more fundraising will take place and more help in other forms will come forward. And add me as another Doper who’d like to help, in whatever capacity I may. I am in southern California, but have many northern California contacts (particularly in education). I don’t know what I can do, but I’m willing to find out. Boy 2.0 has been sitting next to me and grabbing at the laptop keys. He says hello–or really, mlkjljio. May I request pictures of your little owlet? [Previous page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=9) [Next page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=11)