Starting our Life with a Trach……

Sorry we have not been around for a while, but as you all know we had decided to┬áTrach Sophia. We had everything scheduled for monday, but last thursday evening Sophia suffered a massive bloody nose and was rushed to the ER that night. We were able to stop the bleeding but decided she needed the surgery earlier rather than wait. So Last Friday they wheeled our little girl down to the Operating Room....I was trying to be so brave for her and smiling at her at telling her "no more mask" but right … [Read more...]

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...]

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...]

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...]

Fly Fly Butterflies…..

A few weeks ago we received an amazing gift from Cash's Nana Teri, Teri is an amazing SMA Grandma to Cash Goeppert. It was our very own butterfly garden, such a nice surprise and thoughtful gift. In a small container were five caterpillars with tons of food to munch!!!. We always read "the very hungry caterpillar" to Sophia so it was so much fun to show her the caterpillars and have her watch them eat and get bigger and bigger, just like in her story. Everyday we watched them squirm around and … [Read more...]

D-Day……. in other words Diagnosis Day

Two years ago today we got the news that Sophia has Spinal Muscular Atrophy Type 1.....I thought I would wake up today and feel defeated and sad, but instead I woke up bright an early to my daughters beautiful face and have never felt more alive.....I could sit here and write how heartbroken we were two years ago today but instead I will write how I feel today, we are at a place in our journey with SMA that is filled with so much Hope and Promise, we are on the brink of wonderful things to come. … [Read more...]

IPAD Generation 2 Giveaway!

This year..... has been nothing short of INCREDIBLE for The Sophia's Cure Foundation. Together we have blown the doors off of 2011. The community support has grown exponentially and has been nothing short of AMAZING!!!!! We are so thankful to all of you............our supporters who have believed in us and our path forward for SMA. We have been able to conceptualize new fundraising and support programs for the SMA community while maintaining a 100% volunteer status. When we started The 200 … [Read more...]

Charlottesville VA resident runs for Spinal Muscular Atrophy

I have known Joe Rice and the "Rice Family" for over 13 years now, they are more than just dear friends to me but they are my "second family" , they have always treated me like one of their own and when I introduced Vinny to them they immediately embraced him the same way!!! I consider Joe to be one of my best friends and when I called to tell him that Sophia was diagnosed with Spinal Muscular Atrophy (SMA) he was heartbroken, he immediately told us to set up a cause on Facebook about Sophia's … [Read more...]

Sophia’s First Words

I have always known Sophia to be extremely intelligent. The difficulty for me as her father has been the frustration of trying to prove her abilities to others. Sophia has always been able to communicate to us by the different tones she uses with her voice. To others listening to her I can understand how the sounds and pitches Sophia makes may just seem to be meaningless noise. To me one sound means "change my diaper", other sounds can mean "the battery on my DVD is flashing can you plug it … [Read more...]

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