DONNA KEATING

PHOTO 1: The Great Mississippi River Race for Rett Syndrome, a fund-raiser for research for the disorder, began in Minnesota and ended in Venice. Race participant Clark Eid, right, takes a break in Norco during the race to meet Tabitha Forsythe of LaPlace, center, and her parents Karen and Darren Miller. The Millers’ daughter, Tabitha, has been diagnosed with Rett Syndrome. Thirteen-year-old Tabitha Forsythe of LaPlace has a rare neurological disorder called Rett Syndrome. She is among 13 other children throughout the state of Louisiana who are registered as having RS. Symptoms of RS become apparent at the age of 16 to 18 months. Babies and toddlers experience a lack of progression, lose communication skills, have trouble controlling motor movements and lose the purposeful use of their hands. Other problems include seizures, disorganized breathing patterns, curvature of the spine and slow head growth. RS is caused by a genetic mutation of the X chromosome, which causes the developmental disorder found almost exclusively in females. Cases of RS only occur in one out of every 10,000 births. PHOTO 2: On board the Double Helix, participants of The Great Mississippi River Race for Rett Syndrome dock in Norco. Racers were restricted to two-person teams, using single or double paddles. The Double Helix was custom built by Clark Eid and his partner. Racers traveled 2,348 miles from Minnesota to Venice trying to set a new record while helping raise funds for Rett Syndrome research. Wanting to know as much as possible about their daughter’s needs, Tabitha’s parents, Karen and Darren Miller, searched the Internet to learn as much as they could about RS. One day as Karen was doing her research, she saw a website about the Great Mississippi River Race to benefit RS research. It would be the world’s longest canoe and kayak race spanning 2,348 miles to the Gulf of Mexico, with racers competing to set a new Guinness World Book record. The race had already begun, starting at Itasca State Park in Minnesota and continuing down the Mississippi River all the way to Venice. The path of the race would take the boaters through the River Parishes before they reached their final destination. Through the Internet, Karen was able to contact race representative Don Keller, who kept Karen up to date on the progress of the race. He hoped to make arrangements for Karen to meet boater Clark Eid, the driving force behind the race. Eid’s daughter was also diagnosed with RS. Karen wanted to thank Eid, Keller and the many other people who came together to help children with RS. At least, she wanted to cheer them as they passed through the area. In hopes that she would get a glimpse of the boaters as they raced by, Karen and her family and friends made up large signs and planned to cheer the teams as they passed by. She soon received a phone call from Keller, who had made arrangements for her to meet with Eid at a dock in Norco close to the spillway. Waving signs and cheering, Karen and her family and friends greeted Eid and his team as they arrived. Eid and Karen talked about their experiences as parents of children with RS over a picnic lunch of chicken fingers and Gatorade, which Karen provided for the hungry crew. Karen thanked Eid and his crew as they prepared to continue the race and wished them luck. The race was exciting but Karen was also just as excited to meet another parent of a child with RS. It was a truly enlightening experience she would not soon forget. Donations for Rett Syndrome research should be made payable to Rett Syndrome Research and mailed to The Great Mississippi River Race for Rett Syndrome, C/O Rett Syndrome Research Foundation, 4600 Devitt Drive, Cincinnati, Ohio, 4524.