Archives for May 2011

Daddy I’m ready…………..

At night I lay in bed with this little girl, holding her hand, simply amazed at how much I love her. How could you ever know before becoming a parent how your heart could grow, and grow ....and grow every day, consumed with so much emotion. As Sophia's dad I have learned so much about life from this precious little package. There is not a single thing in this world that I would not do for my family. Today I have learned that sometimes you have to nudge your heart out of the way in order to make … [Read more...]

Clinical Trials…..

We are entering an exciting era for SMA.....if you have not done so already, please make sure your SMA patient is registered with the International SMA Patient Registry. You can register online, but you will need to sign some consent forms and mail back. I know it can be confusing, but I just called their 1-800 number to make sure Sophia was registered properly and in 30 seconds they were able to tell me yes!!! I urge all families to do this today!!! … [Read more...]

ZUMBATHON JUNE 11 to help Cure SMA

We are all so excited for this next ZUMBA EVENT!!!!!!!! Dont miss out, register today.... Hosted by Terry Gaynor in Honor of Sophia Barbara Gaynor diagnosed with SMA Type 1 Zumba instruction by Gilly Lugo, Daisy Bugarin Zumba Education Specialist from Los Angeles CA, Yudelka Canela, Lupe Calderon founders and owners of Brooklyns finest zumba studios ; Y & L fitness and DJ by Dino Georgakapolus 11:30 .....Location St. Sebastian Parish Center - 2nd Floor Gym 39-60 57th … [Read more...]

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 … [Read more...]

Pinkalicious mini photo sessions to benefit SCF on July 15!!!

At The Zumba Away SMA event I had the pleasure to meet Dana, and was so grateful when she contacted me to offer this amazing event. Dana is the owner of Mattson Photographers. She is putting together such a unique fun event on Friday July 15. She is offering the whole day of photo mini sessions ($150 a session) with all proceeds going to Sophia's Cure!!!! UNBELIEVABLE :) .....She is having the event at sunken meadow park and in honor of Sophia's Love of Pink it will be a whole PINKALICIOUS … [Read more...]

Mother’s Day….

I know some people may think of this day as one of those "Hallmark" Holiday's but I love Mother's Day.....I loved secretly making my mom cards using all my glitter and all the colors in my crayola box to make the perfect piece of "art", I loved presenting them to her and watching as she acted sooooo excited :) and after she passed away and I had to clean out her closet I loved finding a big box filled with every single letter, card ,picture I had ever made for her.... I loved making her … [Read more...]

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