Young Titan Rallies Against Rare Disease

Smiles and squeals fill the Manhattan home where four-year-old Avalyn Larson is playing with her 11-month-old brother, Titan.

"He's always been very happy," dad Lee says of his younger child. "He loves his sister. His sister is his favorite person."

But behind those smiles has been a lot of pain. Lee and his wife, Ariel, estimate Titan has undergone upward of 40 x-rays in young life, been poked and prodded countless times for IVs and PIC lines, and spent a total of 62 days in the hospital.

Titan was born at 34 weeks. Initially, trouble with gas, bloating and lack of bowel movements was attributed to his prematurity. However, once they went home, it didn't get better. After several return trips to the hospital and treatments to clear his colon, the family finally got an appointment at Children's Mercy in Kansas City.

Titan was five-months old.

"By the time we got there, his intestines were the size of baseballs," Ariel says.

Titan was immediately admitted to the hospital. The same day, doctors did a biopsy of the colon and gave the diagnosis of Hirschsprung's Disease.