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!
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