Sisters, 'Box' Aim to Knock Out Rare Genetic Disorder

A boy who manages to motivate a "box," or gym, without speaking is the inspiration for two Cartersville sisters and their teammates, who are trying to raise awareness and money for the research of MECP2 duplication syndrome, a rare genetic disorder.

Lindsay Bourdon, co-owner of , and her younger sister, Allie, are part of a team set to compete in the 2012 Reebok CrossFit Games Open following a second-place finish at regionals. They hope to raise awareness of the condition that affects their nephew, 10-year-old Ethan Bourdon, through the competition and a local event set for May 12. 

"[Ethan] loves to come to the Crossfit Adrenaline 'box' with his mother, Shawna Bourdon, who also does Crossfit," Lindsay said. "Although he is non-verbal and has some physical and mental disabilities, he does the exercises that he can with a lot of enthusiasm and to the best of his abilities."

MECP2 duplication syndrome, characterized by moderate to severe intellectual disability, occurs almost exclusively in boys and results in delayed development of motor skills, such as sitting and walking, according to Genetics Home Reference, a National Library of Medicine service. Many with the life-threatening and debilitating condition have poor or absent speech, seizures that may not improve with treatment, and recurrent respiratory tract infections.

The Bourdon's say Ethan "continues to fight back to stability" as he recovers from severe seizures, for which he required three hospital stays in Intensive Care during 2011.

"[Ethan] loves a good adventure and is as curious as any other 10-year-old boy. He is happiest when he is surrounded by the people he loves. In the past year, he has found his favorite place on Earth, and that is at ," Allie said. "He bombs in everyday with a mission, whether it be push presses...[or] rowing, his favorite skill...he gets it done with the biggest smile on his face.

"He is the definition of motivation for his family and friends and everyone in the 'box' is so kind to him. When Ethan is in the 'box' trying hard, you can bet everybody around is pushing a little bit harder. He is a constant reminder that every effort is more than worth it."

With a local event—CrossFit for the 401 Project, spearheaded by fellow athlete Andi Lannom and set for Saturday at 9 a.m.—the Bourdon's and their supporters hope to help fund research on MECP2 duplication syndrome. Project 401 works to reverse the condition and allow those affected by it to live normal lives.

"Every CF workout begins with a countdown and we feel like we were delivered that to raise funds needed to begin groundbreaking research for these children and families that desperately need the medical research," Allie said.

How Can You Help?

• Buy $20 tickets to the local fundraiser set for Saturday at 9 a.m. at 790 West Ave. 

• Donate to help support research of MECP2 duplication syndrome.

• Share information about the effort via Facebook.

While Lindsay and Allie, respectively, were ranked fourth and 65th out of 1,400 women competing in the southeast region of the Reebok CrossFit Open, Crossfit Adrenaline's team is 10th in the southeast and 132nd in the world of a total 1,800 competing teams.

Clifton Bennet, co-owner, will serve as the team's coach and mentor. The athletes live and train in Cartersville and include Chelsea Lowery, TJ Menerey, Austin Medford and Stacey Adams.