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SHARING DOWN SYNDROME ARIZONA BY LYNETTE CARRINGTON
Down syndrome is the most common chromosomal genetic birth defect in the world. In Gilbert, we have a wonderful organization that supports expectant and new parents and families of those special children born with Down syndrome. The organization educates, empowers, gives hope and promotes acceptance and understanding. Gina Johnson is the founder and executive director for Sharing Down Syndrome Arizona. ”I started reaching out to parents after David was born, but I started doing what I do in 1991,” says Johnson. She has a 30-year-old precious son, David, who was diagnosed with the genetic disorder and he has proven to be nothing short of a total and absolute blessing. Because she has been through the wide range of emotions experienced by the parent of a child with Down syndrome, Johnson is in a unique position to help guide parents on a loving journey that comes in caring for and being the parent of a child with this condition. The organization provides all birthing hospitals in Arizona folders with Down
syndrome and Sharing Down Syndrome Arizona information for social workers to provide to the parents of newly diagnosed children. Once the child is born, Johnson personally delivers a complimentary parent gift pack filled with books, DVD’s and CD’s about the condition. “There is a difficult emotional process to go through. But, what I love about that is that those tears of sorrow, before they know it, turn to tears of joy,” notes Johnson. Further support is offered to families with the arrangement of play groups for children with Down syndrome and their siblings, a comprehensive lending library, parent support meetings, quarterly newsletters, phone support, Angel Baby adoption, phone support and bereavement support. Sharing Down Syndrome Arizona partners with other service agencies for a full network of support for families and their children. “These kids hold an amazing place in my heart,” says Johnson. Every child and family is special, and she takes the time to personally visit and get involved with all of her families. As for
“These kids hold an amazing place in my heart.”
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her son, he is happy and thriving, loves to bake and calls himself “a chick magnet.” The 15th Annual Sharing Down Syndrome Walk will take place 7-11 a.m. Saturday, September 20th at Tempe Diablo Stadium. Register online to create your own team to walk in honor of someone who has Down syndrome. This is the largest fundraiser during the year for the organization, and it ensures that the many valuable support services remain free for families. When the walk is over at 11 a.m. there will be carnival-style game booths, bounce houses, obstacle courses, a rock climbing wall, music by DJ Ron, a silent auction, ice cream, Jamba Juice, snow cones and cotton candy.
FOR MORE INFORMATION: SHARING DOWN SYNDROME ARIZONA 745 N. Gilbert Rd., Suite 124, Gilbert (480) 926-6500 sharingds.org