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.”

James had emergency surgery to correct respiratory distress, circulation problems, and other issues. “They put a shunt in and discovered his left lung was only partially developed,” Ashly said, with a mere 30 percent capacity. The right lung was 70 percent.

“He spent two months in and out of the hospital. We struggled for months and spent maybe four days at home over two months’ time.” The couple lives in Hampstead, Maryland.

She explained that James developed a serious case of RSV (a viral disease of the lungs). “We almost lost him around New Year’s. We talked to the doctors at the University of Maryland. They gave a gloomy outlook and said we should send James’ records out to other hospitals.”

She and Ronnie began to research their son’s disorder and found a support group online for tetralogy of fallot. A mother named Astrid recommended Dr. Hanley of Stanford University, the pioneering surgeon who had corrected her infant daughter’s heart defect with one operation.

James’ medical records were sent to Stanford, and an appointment was set. “The hospital was very supportive,” Ashly said.

Astrid also suggested Children’s Angel Flight. Ashly called and got a flight. “We were just amazed, especially at how quickly Children’s Angel Flight was able to get this for us.”

In an email note, Ashly wrote that the April 21 surgery was “long and grueling and very stressful, but James came out well, and we were all wonderfully surprised.”

The twin sons of Meg and her husband Jim were born in 2000 and developed into normal, healthy toddlers.  But Meg says Jake and Stone suddenly stopped interacting with each other and losing eye contact.

“We started losing them.  They would line toys up and stare at a TV show. They were hyperactive and would pace in their own world.” Such behaviors are characteristic of autism.

The search for treatment led to a variety of therapies, including dietary supplements, applied behavioral analysis (ABA), “floor time” and others.

Nutritional guidelines call for a diet free of gluten and casein (milk).  ABA is a highly structured plan that teaches the autistic person to listen, to watch and to imitate, and uses positive reinforcement. Floor time is a one-on-one therapy of interaction and play that “opens and closes circles of communication,” according to Dr. Stanley Greenspan, who developed the technique.

The family traveled to and from the Spectrum Center in Bethesda, Md.  There, clinicians offer sensory integration techniques combined with the auditory training theories of Dr. Alfred Tomatis, a pioneer in treating autism.

Meg spends  her entire salary on treatment for Jake and Stone, whom she says are brilliant. She stresses that early intervention is important.

The boys are able to attend a regular school (P-K) with assistance from a paraprofessional.

“Only one of them can speak, and only when he is prompted. Progress is slow. You can’t get frustrated…We’ve come a long way. Children like this used to be put in institutions.”