Carlee Weber, Age 12 Williamsport, PA Home and Family Carlee lives with her mom Nicole, stepfather Keith, brother Chase, stepsister Morgan, 2 cats and 2 dogs. Diagnosis Carlee was diagnosed with Spinal muscular atrophy (SMA). SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. The age at . . .
Phoebe Szosz, Age 13 Barrington, RI Home and Family Phoebe lives with her parents and two older sisters. Phoebe’s father, Noah, also lives with Charcot-Marie-Tooth (CMT). Diagnosis Phoebe was diagnosed at age 11 with CMT, a disease her father has been diagnosed with although, his onset was later in life. CMT results in overall muscle . . .
Trent Tomco, Age 11 Aiken, SC Home and Family Trent is the son of Michelle and Paul Tomco. He has two brothers and two sisters. Diagnosis Trent has Duchenne muscular dystrophy (DMD). DMD is a genetic disorder characterized by progressive muscle degeneration and weakness. DMD is caused by an absence of dystrophin, a protein that . . .
Tysen Cook, Age 16 Watertown, SD Home and Family Tysen is the son of Nicole Cook-Rieffenberger and Justin Ward. Tysen lives with his mother, step-father-to-be, Brad, and 3 brothers, Braxtyn, Camdyn and Cruz. Diagnosis Tysen was diagnosed with Friedreich’s Ataxia (FA). FA’s major neurological symptoms include muscle weakness and ataxia, a loss of balance and . . .
Aiden Atkins, Age 10 Lebanon, TN Home and Family Aiden is the son of Alan and Michelle. Aiden is outgoing and loves to be the center of attention. He is very well-spoken and converses easily with all who have the opportunity to meet him. Diagnosis Aiden was diagnosed with Congenital Muscular Dystrophy (CMD) in 2008. . . .
Bryant “B.J.” Bond, Age 12 Stafford, TX Home and Family BJ lives with his mother and miniature poodle, Cinnamon. Diagnosis In 2005, he was diagnosed with Spinal Muscular Atrophy Type III, at Texas Children’s Hospital, an MDA Clinic in Houston. Spinal muscular atrophy (SMA) is a genetic disease affecting the part of the nervous system . . .
Devin Sundquist, Age 11 Orem, UT Home and Family Devin lives at home with three sisters, his mom and step dad. He loves to play board games and hang out with his family. Diagnosis Devin was diagnosed with Duchenne muscular dystrophy at the age of seven. Duchenne muscular dystrophy (DMD) is a genetic disorder characterized . . .
Cassidy Wilson, Age 15 Roanoke, VA Home and Family Cassidy is the son of Jeanne & Dr. Jeffery Wilson. He has two brothers, Alex and Aiden, and a dog, Sammy. Diagnosis Cassidy has Charcot Marie Tooth (Type 2A), which causes damage to the peripheral nerves and relay sensations, like pain and temperature. CMT can cause . . .
Marion Balderas, Age 13 Moses Lake, WA Home and Family Marion is a happy-go-lucky girl who lives with her mom, Kima, and dad, Izzy. She has two dogs- a poodle named Cloud and a cockapoo named Jager. Diagnosis Congenital Muscular Dystrophy (CMD) refers to a group of muscular dystrophies that become apparent at or near . . .
Joseph G. Killingsworth, Age 15 Point Pleasant, WV Home and Family Joey is the son of Stephanie and Kenny Killingsworth. He also has one little brother. Diagnosis Joey was diagnosed with Mitochondria Myopathy when he was 9 years old. This is a type of muscular dystrophy which affects a specific part of the cells in . . .