Log In or Register to Join The Conversation!

Sponsored Post

How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 3 replies, 3 voices, and was last updated 5 months ago by Alyssa Silva.

  • Author
    Posts
    • #22448
      Alyssa Silva
      Keymaster

      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.

    • #22662
      Sabrina
      Participant

      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.

    • #22664
      DeAnn R
      Keymaster

      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.

    • #22678
      Alyssa Silva
      Keymaster

      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!

Viewing 3 reply threads
  • You must be logged in to reply to this topic.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account

Copyright © 2017-2020 All rights reserved.