Sophia is on the mend ….and a nice surprise in the mail

We are so happy to say Sophia is on the mend…Last week was very scary for us, Sophia seemed to have a caught a cold, and we all know a cold for an SMA child can be extremely scary. I guess I felt very spoiled since Sophia has rarely been sick, but seeing her in that state of helplessness took a lot out of us. The reality of SMA just rushes back into your life as if it was the first day of diagnosis. Thank God Dr. Schroth was very proactive, she put Sophia on a Zpack right away, and she has been improving ever since. We are still fighting the excess secretions but they seem to be more manageable. Sophia gives us strength everyday…. she is here for a reason, and she reminds us all the time!!!!! We were also very heartbroken hearing of the loss of so many SMA children recently, Sydney, Rory, Matthew, Ciara ……It was especially heartbreaking for us to hear of Ciara’s passing, back in Oct we had the pleasure to meet the Van De Loo’s and little Ciara. I remember how beautiful and smiley she was, she reminded me so much of Sophia when she was a baby.  She loved gazing at her mamma, and I loved hearing her giggle when her mamma tickled her…Please keep all these families in your prayers……

All of this just makes us so much more determined to end this horrific disease, we will not stop fighting for these kids, I know in my heart we will get there, I will never stop believing….this dream will be a reality!!!!

We received a very surprising letter in the mail, and after reading this we are just so proud of Sophia, the impact she has on this horrible disease and the difference she  is making!!!!! Thank you Rose for making a difference!!!

About Catherine Gaynor

Mom to beautiful Sophia.... SMA Type 1


  1. Teri Taylor says:

    This gives me chills!!!!! WOW!

  2. Glad Sophia is feeling a bit better! It’s fantastic news about the donation – the kindness of strangers is just incredible and gives me hope :)

  3. very nice Thank you Rose

  4. michele says:

    dear catherine~
    ~a wonderful letter ~especially now~!!!!
    what a relief the little one is better…
    love, m

  5. kassandra torres says:

    So glad sophia is better! i was so worried

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