James has fun in a leaf pile despite his medical problems.

The Internet is a powerful tool for patients and families seeking information about rare disorders, among all the other things found on the super highway. Through an Internet support group, Ashly and Ronnie discovered Dr. Frank Hanley, the renowned pediatric cardiologist who could help their eight-month old son.

Baby James had turned blue right after he was born. At the University of Maryland Medical Center, testing showed he was suffering from a rare condition known as tetralogy of fallot. James was born with almost no pulmonary artery. He underwent surgery, with the surgeon installing a conduit for the missing artery.

 “The doctors thought it was successful,” Ashly said. “It worked for about three months. But then they noticed that the heart wasn’t doing as well.” Read more…

When Shirley H. was diagnosed with breast cancer this past December, she and her husband, Duane, were devastated. The couple lives in Black, Alabama, near Dothan. Duane’s father has been battling cancer for 10 years, and Shirley’s mother also has the disease, but in her case, none of the different treatment regimens prescribed have succeeded in “getting the cancer under control,” Duane said.

The Cancer Center in Arlington, Texas, was recommended for its high success rate in sending cancer into remission, and Shirley insisted that “she had to go to Texas. She was not willing to play games with this cancer and her life.” Read more…