By:Casey Hamilton
Gina and Lee Goatley of McLean County know how important it is to always appreciate the everyday small things they get to do with their son Dylan. Gina says that even if her kitchen is dirty or other tasks needs to be completed, if Dylan wants to play a board game, she stops everything to sit and play with him. This is because Gina and Lee know that their time with their son is precious. Dylan, age 19, was born with DiGeorge syndrome (also known as 22q deletion syndrome) and doctors told the Goatleys that he would never walk or talk or be normal in any way– that he wouldn’t live to see his first birthday. At age one, doctors informed the Goatleys not to expect Dylan to live to be 5 years old. So his parents definitely cherish all the time they have with their son.
What is DiGeorge Syndrome?
DiGeorge Syndrome is caused by a missing piece of chromosomal material on the 22nd chromosome and passed on by parents with the disease. However, it can only be detected through genetic testing. This genetic disorder occurs in one in 2000 live births. No two people are known to have the same symptoms. Over 180 anomalies may accompany a diagnosis of DiGeorge including heart defects, feeding and swallowing issues, breathing issues such as asthma, gastrointestinal disorders, hearing and orthopedic impairments, autism spectrum disorders and learning differences.
Dylan was diagnosed at the age of 6 weeks, and Gina quickly learned that few resources were available to parents of children with the disorder. When she researched in a medical library, she was only able to locate one paragraph in a book that addressed this syndrome. This paragraph also indicated that the ultimate outcome of DiGeorge was death. Even today there are few physicians who are familiar with the disorder, so Gina and Lee must drive Dylan to Nashville monthly to see a doctor at Vanderbilt Hospital. But Gina knows that with appropriate medical intervention, DiGeorge does not have to be a devastating diagnosis. However, despite the fact that there are now three Facebook pages along with conferences, support groups and medical information on the Internet, many people are still unaware of the existence of DiGeorge Syndrome.
Missing Pieces
Therefore, in an effort to educate parents and build awareness of DiGeorge in our community, Gina joined Ashlee Hamby of Henderson, who has a four-year-old daughter with DiGeorge, to form “Missing Pieces,” a support group for parents and families of people with this syndrome as well as other genetic disorders. At their monthly meetings, the group invites guest speakers who help parents understand IEP’s (a student’s specialized education plan for school), Michelle P waivers (a program allowing individuals with developmental or intellectual disabilities to remain in their homes rather than be institutionalized), and other issues parents with special needs children face on a daily basis.
Gina also likes to share the successes of her son and other children in the group so that parents can see that there is a light at the end of the tunnel, and she wants people with younger children with DiGeorge to know that there is help available to them, as well as things their children can do to flourish and be involved in our community despite their exceptional needs. One thing she is most proud of is that Dylan goes daily to the Hugh Edward Sandefur Training Center (HESTC) located in the Wendall Foster Center where he attends a work program for people with mental and cognitive disabilities and is paid for the work that he accomplishes. This serves to build Dylan’s self esteem and confidence. The group welcomes and invites anyone who would like to attend their meetings the fourth Tuesday of each month at 6 p.m. in the Cigar Factory Mall complex, room #199.
Hope Floats Event
Missing Pieces will be holding a free public event on Saturday, August 25th from 4 – 7 p.m. at Panther Creek Park. Many different community resources will have representatives present to answer questions and offer information on a number of special needs issues. Nailed Too, a contemporary Christian/Southern rock band will entertain while attendees and their children can play in the bounce house, have their faces painted, or participate in the cake walk. Food and refreshments will be provided free. At 6:30 p.m., environmentally friendly balloons stuffed with information about DiGeorge syndrome will be released in the hopes that someone will find the information and contact the group with questions or pass the information on to someone who needs it. Everyone is invited to be involved by coming out and making it a family-fun evening. Remember to bring your lawn chairs to comfortably enjoy the band. Last year they had about 100 attendees and they hope to greatly exceed that number this year.