DEEDEE Turned 5 Years Old!!!

In August 17, our beloved diva turned 5 years old. This year the theme for her celebration was Pocahontas. She dressed up with her Pocahontas costume, and enjoyed a day filled with music, movies, gifts, and of course cake.

Thank you so much to our friends and family from Puerto Rico and Florida for being there every year! Especially Grandmothers Millie and Edna, Great Grand Aunt Gladys, Godfather Steve, Godmother Maria, and our supporting cast here in our home away from home.

And above all, we thank God for the privilege of sharing our lives with such an amazing young lady! We love you Deedee! Viva la diva!!!

SMA Candle Lighting

The second Saturday in August is the official SMA Awareness Day worldwide. Families and friends light a candle in honor of so many SMA angels who watch from Heaven, and for our SMA warriors who keep fighting SMA every second... We light a candle in hopes for a cure, and to manifest that not a single kid has been forgotten.

Help us in our quest to find a cure!

Gene Therapy: For donations to this end, reach the Sofia's Cure Foundation. They donate 100% of their funds for gene therapy, and they have an anonymous donor that is matching whatever quantity they raise.

Animal Model: Reach Gwendelyn Strong Foundation's 200K for SMA project if you are interested in funding Phase Two of the first ever SMA pre-clinical animal model.

Virginia Vacation Getaway!

During the last weekend of July, Deedee and her family went on to Virginia Beach to enjoy a vacation getaway weekend won from the Joseph Lillo SMA Foundation for Children. This is a non-profit organization committed to raising awareness, and raising money for research and medical equipment for families affected by SMA and other disorders. Little Joseph earned his angel wings when he was just three months old because of SMA, and through this foundation his legacy of hope keeps on thanks to all who loved him dearly.

Deedee was lucky enough to win this family getaway, a contest open to SMA kids within the Tri-State area. From Friday 27th to Monday 30th, Deedee made this journey and savored every second of it... She fought sleep at all moments as she did not want to miss a thing! So, she got to travel the Chesapeake bridge-tunnel, stay at Dolphin Inn where she enjoyed a close-up-and-personal  view of the beach and ocean, visit Busch Gardens, visit Grommet's Island, and enjoy close family time with Mom, Dad and sister Kali.

This adventure marked a huge step for us all. Ever since our move from Puerto Rico to New Jersey, we had not ventured far as we had to be wary of Deedee's delicate condition... She frequently ended up in the hospital staying there for weeks. This is the first time we venture to a place that is beyond two hours away... Reaching this big milestone for our family has been priceless.

We have seen the bad and the ugly of SMA, but we won't let it stop Deedee. She has much to accomplish, and we are here to provide the tools so she can make her dreams come true. Viva la Diva! Watch out world! Our birthday girl will be 5 years old in two weeks! Take that SMA!