Liam Rust, Age 12 Sparta, NJ Home and Family Liam lives with his sister Emma, and parents Laura and Bill Rust along with his cats and dogs. Diagnosis Liam is diagnosed with Spinal muscular atrophy (SMA). It is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. The age . . .
Joseph “Joe or Slim” D. Megill, Age 15 Rio Rancho, NM Home and Family Joseph lives at home with his mom, dad, two sisters and four brothers. He also has two dogs and two cats Diagnosis Joseph was diagnosed with Charcot-Marie-Tooth (CMT) at the age of 10. CMT causes muscle weakness and atrophy, and some . . .
Adelina Rosso, Age 8 Manhattan, NY Home and Family Adelina lives with her father John, mom Lucinda and her older brother John Robert. Diagnosis Adelina was diagnosed at the age of 3 with Central Core disease. The disease is named for damaged areas within muscle cells (the “cores”), where the filament proteins are disorganized and . . .
Samantha Grace Hyde, Age 7 Glenville, NY Home and Family Samantha lives with her 10 year old sister Ashley, parents Lora and Chris, and pet bunny “Princess” Diagnosis At age 2, Samantha was diagnosed with Dejerinne-Sotta Disease. Dejerene-Sottas (DS) is a subtype of Charcot-Marie-Tooth disease (CMT). DS is a severe neuropathy (disease or abnormality of . . .
Andrew Nichols, Age 8 Newark, OH Home and Family Andrew lives at home with his younger brother Ethan, and parents Jodi and Mitch. He loves his animals and especially his soon to be service dog, Hero! Diagnosis David was diagnosed with Duchenne muscular dystrophy when he was 3 years old. DMD is a genetic disorder . . .
Caleb David Pendley, Age 14 Oklahoma Home and Family Caleb has two loving parents, Marlene and Noel, along with three siblings; Isaac (17), Micah (11) and Abigail (9). His family recently traveled to the Grand Canyon and they had a great time! Diagnosis Caleb was diagnosed with Duchenne muscular dystrophy at the age of 8. . . .
Christopher Hay, Age 8 Hubbard, OR Home and Family Christopher is the son of Tammy and James Hay. He has one older sister, Emily. Diagnosis Christopher has Spinal Muscular Atrophy (SMA) Type 2. He was diagnosed in September of 2007. SMA is a genetic disease affecting the part of the nervous system that controls voluntary . . .
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 . . .