On Her Terms

Yesterday was a very emotional time for our family. The second birthday of an SMA child is a huge milestone…….one that we are all told we will never see. I am so grateful to the countless families who have helped us along through Sophia’s journey with Spinal Muscular Atrophy. We have learned so much from SMA families who have Type 1 children who were beating the odds. It was these parents who have assisted us in finding the best care for Sophia. I am forever thankful for your support, it has enabled us to see things from a different perspective. We have always been so very positive with Sophia. We have showered her with love. I cherish every moment with my family. I have never left the house without kissing each of them and telling them I loved them.

Feb 27, 2011 the proverbial monkey was lifted off our backs. Sophia has beaten the odds. We have come across a new path in this disease……a path that has allowed us to follow as Sophia takes the lead. We as a family will follow Sophia as she helps us to navigate this unchartered territory. We are so excited to see where Sophia takes us on this journey. Yesterday SMA lost a huge battle……….and Sophia won. SMA had 2 years to claim our daughter……..Sophia defeated Spinal Muscular Atrophy ……………and now …….this entire journey no matter where it takes us…………………………IS ON HER TERMS!


  1. Three cheers for Sophia and to you for being such wonderful parents!

  2. Sophia is a little fighter, she’s not going anywhere for a long time! In a short period of time, she has touched so many and taught us all about how precious life is!! Happy Birthday to the prettiest girl around!! xoxo

  3. Looks like the BIG 2 YEAR OLD BIRTHDAY party was a success! From the cake to the cutest little girl turning two:) Such special memories are made everytime one of our kiddo’s turns another year older. So happy you all are celebrating #2!
    Lots of love to your family from ours!

  4. Jaime Goode says:

    Happy Birthday Sophia! What a special day for the Gaynor family. Here’s to many many more!

  5. Giuseppina says:

    Happy birthday little sophia. Hugs from Giuseppina with Sebastiano, SMA type 1 of 4 and a half years old from Italy

  6. Congratutatiions on your big victory!! We will continue to hope and pray that no more children will be stricken, and that a cure is around the corner!! God Bless yo Sophia!

  7. donna zittel says:

    She is simply amazing. May God bless you all.

  8. Sounds like you had a perfect day beautiful Sophia ! Sending germ free hugs and kisses from your friends in IL.
    You are in our prayers every night.

  9. Michelle O'Dwyer says:

    What a milestone! We have always known that Sophia was special, she touched all our hearts. We know that Sophia was sent to change the world. Love you, Princess. We will celebrate many more birthdays with you.

  10. Awesome!!!! says:

    YES! I knew this would come, AMAZING!!!!!!!!!!

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