Krystal

My daughter dosed with commercial Zolgensma earlier this week. The process was simple for us, but I think it was due to the road that was paved from other families that fought hard for coverage.

OF course I read his books! 🙂 It has helped me feel better about my daughter’s future and to remember to laugh and just live life!

Thanks for your post! Perhaps I have a dark personality, but I thought your comment was funny so I didn’t think your humor was “dark” 🙂

I enjoyed this post. It gives me a lot of hope for my daughter in that there will definitely be things that she will be able to enjoy, “just like any other kid.”

I agree with this post. It’s hard. SMA sucks, despite the great treatments out there. No matter what, my child still has SMA, and will forever have it. We have been told over and over, “If you don’t use it, you lose it,” and I feel like this is correct even with treatment. Because of this phrase, it’s been hard trying to balance letting my child…[Read more]

How did you get aides for school? I would like to enroll my daughter into an early start program when she turns 3 (assuming that this is an option for her), and I wonder how to get an aide to help her with the physical disabilities. I have heard of some families having a hard time convincing the school that their child is not mentally disabled and…[Read more]

Thanks for sharing this post. I am somewhat in this situation. My daughter is 19-months-old, with Type 2. My son is 7 weeks old, and fortunately, he is a non-carrier. We did not know my daughter had SMA until during my second pregnancy. I had always thought of having 4 children, but my husband wanted only 2. Before my daughter’s diagnosis, he had…[Read more]

I definitely have questions about this. My husband and I plan to move to a bigger home in the near future, and will probably have questions about how to remodel the bathroom. I think ideas I’ve seen from other families that have been helpful are floating sinks and a roll-in shower. I’m assuming having a bath chair or some kind of seating area in…[Read more]

I agree with you. Everyone, SMA or not, is different, and one diet may not work well for you even though it works well for someone else. Since my daughter is still very young, she is not on any special diet, but we are definitely trying to get her to eat high-calorie foods because she’s starting to get so thin!!

Thank you for this tip of grinding up your meat and using Mayo as a binding agent! I think that’s a great idea and I will definitely utilize this for my 19-month-old Type 2 daughter. We currently give her baby food meat that’s store-bought and she eats it well, but I wanted to find a way to give her meat that my husband and I make. Your idea…[Read more]

I am anxiously waiting to get my 19-month daughter a Permobil Koala. She trialed the Permobil wheelchairs and felt the Koala was the best one for her. We won’t be expecting the chair until fall or even winter of this year, but I am excited for when it arrives so she can become more mobile during long-distances! But when that happens, it will be…[Read more]

Hello Rachel,

It’s nice to virtually meet you. My daughter is probably one of the few youngest members on this site. She is 19 months old with Type 2. I am honestly here to build relationships with the older SMA population so I can prepare my daughter for the future and learn more about SMA and how it affects daily living. We live in the Dallas…[Read more]

I’ll be attending the conference, So I hope to see you all there. 🙂

Hey Emma,

So I do not have SMA, but my 15-month daughter does. I lurk these forums often. I wanted to let you know that although I do not have SMA, lots of women without SMA experience your menstrual symptoms, to the point where it is very life-draining and very difficult to manage daily activities. You can certainly take the pill every day…[Read more]

Welcome Jennifer! I am a lurker on this forum, as I do not have SMA, but my 15-month daughter was diagnosed a few months ago at 12 months old with Type 2. She never walked, or stand. She can only sit up unassisted. I got here to learn about SMA, to learn about how young and older members of this forum live. I think it’s great to have interactions…[Read more]

I heard it’s becoming standard care for SMA patients to get a sleep study, BUT that depends on if the pulmonologist thinks its appropriate. My 15-month daughter recently saw a pulmonologist, and after assessing her and asking me questions about her sleep, he does not think she needs a sleep study at this time because her chest x-rays are clear and…[Read more]

It is a struggle for my 15-month daughter to put on weight. About two weeks ago, she was in the 10th percentile in weight for her age. She just wouldn’t gain anything! She was getting longer, but not losing or gaining, and since my husband and I are trying to get her into an upcoming clinical trial in April, my daughter needed to gain weight (she…[Read more]