International conference to address needs of patients with Trisomy
Families learn coping strategies while celebrating the lives of their children
July 19, 2005
When a child is diagnosed with Trisomy 18 or 13, no one understands better the impact than other families in the same situation. That’s why the Support Organization For Trisomy 18, 13 and Related Disorders (SOFT) holds an international conference every year. This year, the Rochester-based group is gathering July 27 to 31 in Rochester, with the help of the Golisano Children’s Hospital at Strong and the Kirch Developmental Services Center at the University of Rochester Medical Center.
Trisomy 18 syndrome is a rare genetic disorder that affects about 1 in 6,000 live-born infants. Children who are diagnosed with one of the chromosomal disorders can have mild or severe problems and are usually small at birth. Some of the recognizable features of a child with Trisomy 18 are a prominent back part of the head, short eyelid fissures, small mouth and jaw, external ear variations, clenched fist with overlapping fingers, small fingernails, thumb abnormalities, short breastbone, club feet and redundant skin at the back of the neck.
More important are the troubles infants may have with growth, feeding, breathing, development and mental retardation. Children with the disorder can live hours or as long as Ogden resident Stacy VanHerreweghe, who at 24 may be the fifth-oldest person with Trisomy 18 in the United States.
Stacy’s mother, Barbara VanHerreweghe, is the president of SOFT and one of the organizers of the conference, which will take place in several locations around Rochester including the Rochester Airport Marriott and Strong Memorial Hospital. VanHerreweghe said the conference is a wonderful opportunity for families to learn from each other.
“It’s the time to get together with other families who can truly understand what you’re going through,” she said. “When they get here, it’s like a huge family… It’s just a time when people look at your kids, but they look at your kids with love instead of pity.”
The conference includes free medical clinics which give families the opportunity to receive highly specialized care and second opinions from health care professionals who have experience working with children with Trisomy 18, 13 and related disorders. Staff members from the Kirch Center, which is supported by the Andrew J. Kirch Trust, volunteer their time to organize and staff the clinics and arrange for other subspecialists to volunteer their time, as well. Families can choose to have consultations with specialists such as cardiology, developmental pediatrics, gastroenterology, genetics, neurology, nutrition, occupational therapy, orthopedics and urology.
VanHerreweghe said families “really, really count on” the clinics because many of them live in areas where highly specialized care is not readily available. More than 25 children are expected to take part in the clinics and about 75 families are expected to attend the conference.
Much of the conference deals with coping strategies and grief. Families can learn about end-of-life options and wills, but they will also celebrate life with their children. Families will be able to contribute to an exhibit remembering their children, and during the Saturday picnic, families will release balloons to pay tribute to those who have died.
For more information about SOFT, please contact Barbara VanHerreweghe at 585-594-4621, 800-716-SOFT (7638) or visit the Web site at www.trisomy.org.