Up up and away………..SUPERMAN……..

We received a beautiful card from Marisa Conte. Marisa is friends of Coby Quinn Kulis's family. Coby was a beautiful little boy who lost his battle to SMA on February 27, 2011. The same day our daughter Sophia turned two...... Lori and Dave are one of the bravest people we know, they spent every second of every day they had with Coby loving him, making him smile, and making beautiful memories that they will cherish forever. Ever since the day Coby flew to heaven they have spent every second of … [Read more...]

Asking for Prayers…….

I first want to apologize if we seem MIA lately.......besides Sophia having a rough winter (thank god she seems to be over her sickies) We have been dealing with a lot of personal issues. Vinny is the last person to ever come out and ask for prayers or sympathy.....but I am......Vinny has been dealing with his own disease since I have known him, Crohns Disease......When I was pregnant with Sophia we got the disease into remission and under control, but as you can imagine once Sophia was … [Read more...]

Aiden……..

I remember when Sophia was first diagnosed and Vinny and I started meeting other SMA families online ...we would look at all the photos of the beautiful children. I will never forget when we first came across Aiden's photos......his big beautiful smile was so infectious it just made you want to smile. It was hard to look away!!!!!! You could see the happiness radiate from him, you could just tell all the love and happiness his mommy and daddy brought him just poured out from him!!!! We were … [Read more...]

In Memory of Sophie Kathleen TerHorst

We received the following letter the other day.....though Sophie was only here for a short while, she made a difference and inspired all around her.... Dear Vincent Some very dear friends of my wife and mine recently lost their daughter to SMA. Her name was Sophie Kathleen TerHorst. She was a beautiful little girl who brought tons of joy to the world in her short nine months with her family and friends. Sophie's fight with SMA shed light on the character of her parents, Mike and Liz, too. … [Read more...]

Merry Christmas…..

Sophia has been sick for a while now and last week we found out she has Serratia, pseudomonas, and Staph......again we say "Thank God for her Trach" all this has been manageable at home, and she has been in good spirits. Thank you for all the prayers for our sweet girl. Despite Sophia's Sickies we had a wonderful Christmas...This year Sophia really "Got it" and understood all about Santa and all the christmas magic....We made cookies for santa on Christmas eve and we put the kids in their … [Read more...]

Making Strides in our “little corner” of the Spinal Muscular Atrophy (SMA) WORLD

We were deeply saddened by the loss of Diana Casares this past week. Diana was almost two years old and had SMA Type 1 like Sophia. the Casares's lived very close to us here in NY, and our families had become close friends ....Though Diana was not here very long, she made a huge difference to the SMA Community here on Long Island. Since Sophia's diagnosis Vinny and I struggled to find a local hospital that would be "on board" with the SMA protocol......over the years we heard horror stories … [Read more...]

Christmas Magic…………

I love Christmas....I love the decorating, the music the baking.......and as a child one of my favorite parts about Christmas season was going to see Santa!!!! I never thought this would be possible with Sophia...until yesterday....another blessing about having her Trach.....We decided last minute to head on over to Hicks Nursery in Westbury, I heard they had a Santa with reindeer and an animated Christmas walk through.  So I dressed Sophia in her special "going to meet Santa outfit" and we all … [Read more...]

Time to give thanks…….

We recently had another amazing photoshoot with Summer lyn of Summerlyn Photography.....Summer has been part of our lives since Sophia has been 7 days old, and has blessed us with amazing photos for us to treasure always. Since Sophia's Trach surgery we have been feeling a bit more adventurous and decided to take this particular photoshoot to the beach!!!!! Sophia is like her mamma and loves the beach, the water the sand, listening to the waves...she is definitely  a water baby :)...Of course we … [Read more...]

Wonderful Surprise!!!!!

We were contacted today by one amazing person, who has learned about SMA through following the journey of one amazing SMA kid..... Charleston Goeppert. This "person" who wants to remain anonymous, has been following Cash's SMA Journey ..Hope for Charleston... and was so inspired by him that they wanted to do something to honor his upcoming 2nd Birthday!!!!!!!!!!!!! This person will be donating the proceeds for an IPAD for an SMA KID in honor of Cash's second birthday!!!!!!!!! This literally … [Read more...]

Sophia’s Cure IPAD GIVEAWAY!!!

We are so excited to be giving away another IPAD!!!!!! This all became possible after we were entered into the Respironics contest....because of the overwhelming support for SCF they have generously donated the proceeds for this giveaway. Ok so enough already ...right!!!! Lets get on with this giveaway!!!! Here are the eligibility requirements: 1) There must not be an IPAD in the HOME 2) For SMA Kids/adults only Soooooo how to enter: 1) Comment on this blog post below please include … [Read more...]

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