The Need for Support

Are you a lucky person? Do you have children who are happy, energetic and healthy? If you do, then you are indeed a most fortunate person!

Many parents are faced with questions, fears and sadness when learning that genetic test results indicate an abnormal condition for their child. When confronted with this realization and the challenges they may experience, emotional support is sorely needed.

The Greenwood Genetic Center is very well known and respected for its research, diagnostic and clinical components, but I want you to know about another facet of the Center.

Gail Stapleton is a Genetic Counselor and Family Support Coordinator in the Greenville office of the GGC. Gail has been involved in family support endeavors since 1996 when she and Dr. Curtis Rogers became associated with the Down Syndrome Family Alliance of Greenville. Since that initial involvement, Gail has been instrumental in establishing support groups for families of children with Fragile X syndrome, Angelman syndrome, Williams syndrome and Velocardiofacial syndrome. These groups began in essentially the same manner: one family seeking to have contact and support with similarly affected families.

Gail researched the databases, surveyed the families with these conditions, and coordinated the initial gatherings. The groups have continued to meet and grow.

The GGC also hosts an international support group for families who have children with a chromosome disorder termed the 22q13 deletion syndrome. This group meets biennially in Greenville, with the most recent meeting held this summer. Forty-six families attended from the United States, Canada, Ireland and Brazil. Much work is needed to host these families. Providing childcare is an important feature allowing parents needed free time and the ability to hear various speakers without interruption.

We would like to thank the Greenwood High School students who volunteered to assist in this summer’s 22q13 support group meeting.