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  • Advice for Parents and Caregivers

    Posted by alyssa-silva on February 25, 2020 at 11:02 am

    We have some new members who are parents and caregivers. So I thought it’d be a great idea to start a thread with some helpful insight that could benefit our new members.

    What’s one piece of advice you’d give? I’ll go first.

    Stress is inevitable on both the parent/caregiver and person living with SMA. Give yourself permission to rest— even for a moment. In the hustle and bustle of the everyday mundane, sometimes both parties need a moment to themselves, and that’s ok. Feeling rejuvenated is better than feeling overwhelmed.

    alyssa-silva replied 4 years, 3 months ago 3 Members · 3 Replies
  • 3 Replies
  • sabrina

    March 10, 2020 at 3:44 pm

    That was great advise. I’m actually looking for some advice and awaiting to be accepted in the caregiver group but I just thought i reach out. I am a mother taking care of my 19 month daughter with SMA TYPE 2. She currently takes spinraza doses every 4 months and her neurologist want us to try the zolgensma before she turns 2 years old. I am truly blessed to say my child is doing very well. She start receiving spinraza at 9 months and she has made wonderful progress she sits up on her own she crawls on her own. She even can stand up on her own if she has something to hold on to. So now I have a decision to make about the zolgensma. I dont know if we should just be patient with spinraza because she is progressing so well or get the zolgensma and see what happen it’s really mind boggling and I just want to make the best decision for her.

  • deann-r

    March 11, 2020 at 12:18 pm

    Hi Sabrina,  Thanks for sharing your situation.  I imagine many parents have faced a similar decision to make.  First I want to say whatever option you choose will be the right choice for your family.  As an adult living with SMA my perspective may be different from a parent perspective.  Looking back if I would have had the choice at that age I would choose the one time treatment that targets the main cause of my disease, Zolgensma.  Again this is just my opinion and there are a lot of things to factor in the decision making process.  When I was diagnosed there were no options.  So, although it seems overwhelming it’s a good predicament to be in.  Best of luck to you and your family.  Sending hugs your way.

  • alyssa-silva

    March 11, 2020 at 9:58 pm

    Hi Sabrina. I echo DeAnn’s sentiments here. I’m sure you must feel overwhelmed with these life-changing decisions to make, but it is truly a gift to have the options today. I, too, had no available treatments when I was diagnosed 29 years ago.

    Although it is ultimately your decision, according to research Zolgensma seems incredibly promising. Spinraza is also doing incredible things in children, so in my personal opinion, there’s no wrong answer here. You sound like a great momma, and I’m sure whatever decision you make will be the right one for your daughter. Deep breaths!

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