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Virginia Beach Child Flies to ‘Best Doctors in the World’

Kristine first started to become concerned when her two-year-old son, Zeq, weighed only nineteen pounds and was severely malnourished. His body rejected all foods, and Kristine was forced to continue breast-feeding him since that’s the only nutrition he could tolerate. When she took him to get checked for allergies, his tests came out positive for every food. The doctors thought it was a skin disease; Zeq was scratching his arms and face until they bled.

A doctor recommended they schedule an appointment with a dermatologist at Johns Hopkins Medical Center in Baltimore, Maryland. The dermatologist at Hopkins knew Zeq’s problem was bigger than a skin disease. The family, who traveled to Baltimore from their home in Virginia Beach, Virginia, saw an immunologist that day who diagnosed Eosinophilic Esophagitis or EoE. Kristine recalls, “I felt like the weight was lifted off my shoulders and thrown right back at me.”

EoE is considered a rare disease. It occurs when eosinophils, a type of white blood cells that normally are found in the bloodstream but collect in the esophagus instead. These cells attack foreign objects in the body to protect from disease and infection, but in the esophagus they are deadly. The eosinophils attack any food the patient swallows as if it were a foreign object, virtually making the patient allergic to every food. To diagnose EoE, immunologists take an upper endoscopy and a biopsy of the esophagus to estimate the amount of eosinophils in the patient’s esophagus. One thousand eosinophils in the esophagus is considered high. Zeq had 80,000!

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When Suzanne was pregnant with her second son, Jace, the ultrasound showed that he was perfectly healthy. Shortly after his birth, however, Suzanne and her husband, Danny, discovered that Jace had a very rare condition that affects only one in 400,000 children.

Jace, who is two,  suffers from cloacal exstrophy, also known as OEIS. The abbreviation comes from four common symptoms of the disease: an omphalocele, or protrusion of the intestines near the umbilical cord, exstrophy of the bladder, an imperforate anus, and spinal defects.

Since birth, Jace has had various complications and surgeries and still has many surgeries to come, but the family remains positive and encouraged through it all.

“Through everything, this has been the sweetest time of our lives,” Suzanne said.

Although doctors had believed that Jace would never be able to run or even walk, the little boy is doing both. Despite having OEIS, he is still able to enjoy many of the things that children do, including running, playing, and even wrestling with his three-year-old brother, Ian

“He does everything with a little bit more spunk,” Suzanne said about Jace.

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Our Mission

image3The mission and purpose of Children’s Angel Flight (CAF) is “…to ensure that no needy child patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance air transportation.”

Children’s Angel Flight Story

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.”