By Robyn St. James
Little is known about the world’s most common genetic disorder, Down Syndrome. It is caused almost by accident, when the smallest chromosome in the human body is incorrectly reproduced.
Many parents in the Tampa Bay area have one or more children affected by Down Syndrome. Ten years ago, as the disease became more prevalent in popular culture, an organization was born named Families Raising, Inspiring, Educating, and Nurturing Down Syndrome (F.R.I.E.N.D.S.) founded by Theresa Mastella, Debbie Harrington and Leslie Conway in 2004. F.R.I.E.N.D.S. is a Down Syndrome family support group serving the Tampa and Brandon areas. It was formed out of a need for families to connect and lend support while networking and educating each other about Down Syndrome. The organization consists of 135 families.
It is a non-profit organization that relies on donations and fundraisers for its funds. It provides support and free information from other parents by referencing nationally known resources. Families who have Down Syndrome children “will help others look beyond their child’s diagnosis and delight in the joys of parenthood.” Families help others understand new terminology, supports and services that will help their child successfully grow.
Mastella, one of the founders of the group, currently lives in Valrico with her 11-year-old son Anthony. When her son was born, she left her job in the marketing industry to “learn how to support his development and work to overcome his challenges.” She plans to begin a new job this fall as a teacher at Pepin Academy in Riverview. She received recognition for “the continued development and services to the community from Infants & Young Children Tampa Bay.”
The support group meets the first Friday of each month with the next meeting on Friday, August 1 taking place at the Brandon Community Center located at 502 E. Sadie St. in Brandon at 6:45 p.m.
Down Syndrome is a genetic disorder, but is not hereditary. It is often associated with physical and intellectual growth delays and characteristic facial features. In more than 90 percent of cases, the extra chromosome copy comes from the mother and her egg, and in about four percent of cases the father and his sperm is responsible; in the remaining cases the syndrome develops post-fertilization. About one in 700 babies are affected. About three quarters of embryos with Down Syndrome miscarry before birth. About 6,000 babies are born in the U.S. each year with the disease.
F.R.I.E.N.D.S. can be reached at email@example.com or at www.friendssupport.org.