Dustin Jay blessed our lives for 24 beautiful years. The name Dustin means “Valiant Fighter”, and he was definitely that. He was a fighter for the day he came into this world. He was born on December 2, 1993 weighing in at 3 lbs. 9 oz., and we had him home by Christmas that year – a Christmas miracle. We had no idea what Cornelia deLange Syndrome was, or the rollercoaster ride that was ahead of us.
Dustin battled respiratory illness, reflux, and seizures during his life. He endured numerous surgeries and countless days in the hospital, but always seemed to bounce back. Even without words, he could always get his point across, and made sure everyone around him knew exactly what he wanted. Dustin loved taking long walks in the park, playing with his Legos, listening to music, spinning in his special chair, cuddle time with mom, and having his back and feet rubbed. Dustin touched many lives during his short stay here on earth, with his contagious laugh and beautiful smile. Dustin was our angel here on earth.
Dustin joined the angels in heaven on August 6, 2018. There is a huge hole left in our lives where he used to be, but we cherish all the beautiful memories we have of him each and every day. We will also cherish all the friendships and extended family that we gained through the CdLS Foundation, and numerous family gatherings we attended.