SMA News Forums Forums Our Community 31 Days of SMA 2021 31 Days of SMA 2022 Day 10 of #31DaysofSMA: I Am So Lucky That This Community Exists

  • Day 10 of #31DaysofSMA: I Am So Lucky That This Community Exists

    Posted by kevin-schaefer on August 11, 2022 at 10:00 am

    Amanda Hanki’s daughter, Harper, was diagnosed with SMA Type 1 two and a half years ago. Though adapting to life with SMA was overwhelming at first, Amanda was grateful that Harper was able to receive the treatment Zolgensma. Throughout her family’s journey, she’s found strength in the SMA community. Read their story here.

    Here’s an excerpt, “The natural progression of SMA type 1 is something that I wish I didn’t have to learn about. The diagnosis was devastating. The community, on the other hand, has been nothing short of incredible, supportive, and uplifting! It’s that family I never knew I needed, and I can’t wait for Harper to realize how lucky she really is to have these families and lifelong friends supporting her as she grows.”

    Can you relate to Amanda’s story?

    SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.

    deann-r replied 1 year, 10 months ago 3 Members · 2 Replies
  • 2 Replies
  • alyssa-silva

    Member
    August 13, 2022 at 10:57 am

    Yup, I can relate to Amanda’s story 100%. I don’t know what I would do without the SMA community. Even though I haven’t met the majority of them, it’s just so comforting to know we have each other’s backs. I don’t think I’d be where I am today without them. Hard to believe I went most of my life without these amazing people!

  • deann-r

    Member
    August 15, 2022 at 10:02 am

    Agree! Who knew a genetic defect could make you a member of such an exclusive club. Seriously though, there are things that only those of us with a connection to SMA understand.

    It’s also amazing to see the evolution of SMA. Even though diagnosis might still feel devastating, treatments change the game. It might not always be a walk in the park but I think Harper has a bright future ahead of her.

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