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Four-Year-Old Enjoys Angel Flight Adventure |
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During her four years of life, Chloe has had more challenges than most people experience in a lifetime. She suffers from eosinophilic esophagitis, a disease that causes her immune system to mistake food for an enemy. It attacks by sending white blood cells to the esophagus, which in turn causes inflammation and pain. Treatment by local doctors was ineffective.
Janelle learned about a specialist at Cincinnati Children’s Hospital, Dr. Putnam, but needed a way to get herself and Chloe there. Angel Flight arranged a round trip from their home in Chesterfield, Virginia, to Cincinnati. “We were treated like VIPs!” Janelle said. “Chloe enjoyed the flights and felt like they were an adventure.”
At the hospital, Dr. Putnam was able to identify four foods that Chloe could safely eat. “Before going to Cincinnati, Chloe was sick all the time and had developed a severe aversion to eating any kind of food,” Janelle said. “She is regaining her desire to eat, and is now a happy four-year-old girl who is rarely sick.”
Chloe will have to travel back to Cincinnati several times every year for ongoing care. She and her mom can count on Angel Flight to help them. |
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‘No Other Way To Get There’ |
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Before the mid-1980’s, little was known about mitochondrial disease. Patients were likely to be misdiagnosed as having cerebral palsy, Parkinson’s or other disorders.
Such was the case with Emily, a 14-year-old girl from Ellicott City, Md., whose parents were told she had cerebral palsy. Emily, who exhibited symptoms at birth, is fully dependent and unable to walk, eat, or talk.
“Her disorder is in the muscular dystrophy family,” says her mother, Kathy.
Kathy is a former pediatrician who stays home to care for Emily and two other children who also have the illness but with milder symptoms. Kathy herself has mitochondrial disease and says her symptoms include muscle twitches, GI problems, a weakened immune system and allergies.
John, 7, has autism and Crohn’s disease. Kelly, 17, has severe ADHD. Both suffer from muscular problems due to low muscle tone and weakness.
Through advanced research, scientists have learned more about abnormalities in the molecular powerhouse known as the mitochondria, which converts glucose and oxygen into energy.
But due to an inherited condition, the mitochondria can fail, causing cells to lose energy and become damaged and even die.
Last summer Emily was able to take two Angel Flights —first to be evaluated and diagnosed, and then to undergo surgery.
“She seemed to enjoy the flight,” Kathy notes. “The pilots couldn’t have been more wonderful. There was no other way we could have gotten down there.”
Emily suffers from severe scoliosis and, following diagnostic
tests, was deemed to be a good candidate for the spinal fusion surgery.
The complex seven-hour surgery required inserting rods and screws in her back.
“She was in the hospital for a week,” her mom says. “She is still on bed rest. It’s a long recovery.”
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Flying with Angel Flight®: ‘Fulfillment of a Dream’ |
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Everyone was in high spirits that Monday morning when the bus rolled out of the church parking lot. Jack and Katherine were among 52 senior adults traveling to Branson, Mo., last May for a couple of days of fun at the popular entertainment resort.
About three hours short of Branson on the second day, the bus pulled into a rest stop.
Suddenly, as he was coming down the steps, Jack, who is in his late seventies, began to stumble, drawing the attention of a nurse on board, June Edwards, who determined Jack had suffered a light stroke.
Once in Branson, he was taken to the hospital. Fortunately, physicians determined the stroke had caused no damage. But the question that loomed was, how would Jack get home once he was discharged? Riding on the bus was not an option.
“We tried flights out of Springfield, but he would have to make connections, and the tickets were cost-prohibitive,” Rev. Phillips noted.
It happened that June’s son-in-law, Ron Gibson, is an Angel Flight® pilot. She and her husband Herb, also on the trip, contacted Ron, who agreed to fly Jack home.
Though the group had to leave on Thursday to go home, Jack and Katherine were able to extend their stay at the hotel for another day until Ron’s arrival.
He flew them in his Cessna 182, stopping in Nashville where they rendezvoused with the church group whose bus had also stopped over in Nashville, then resumed the trip home.
“It was providential, the way it all worked together,” said Phillips.
A highlight of the flight for Jack, who was himself a pilot and had even built a passenger plane, was having an opportunity to sit in the co-pilot’s seat, making the trip “even more miraculous.
“You’ll never know how thrilled he and Katherine were to get to fly with Angel Flight,” Phillips said. “To get back in a plane was the fulfillment of a dream.” |
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Angel Flight® Helps Boy Fight ‘Silent Epidemic’ |
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Known as “the silent epidemic” because its symptoms are mild or nonexistent, Hepatitis C is extremely rare in children, with a lower than 1 percent occurrence, compared to up to a 40 percent prevalence in adults.
Like other boys his age, the seventh grader from Johnson City enjoys playing sports. His favorites are soccer, basketball and baseball. He’s also an avid reader. But unlike others, Garrett takes part in a clinical drug trial that produces discomforting flu-like symptoms. He is under the care of Dr. William Balistreri, one of the world’s most foremost authorities on pediatric gastroenterology and liver disease.
As one of some 112 child participants nationwide, Garrett is treated with the drug pegylated interferon along with ribavirin, a regimen currently FDA-approved for adults. He must also travel to see Dr. Balistreri in Cincinnati once a month.
To get to Dr. Balistreri, though, means a long journey from the Volunteer State to the Cincinnati Children’s Hospital Medical Center in Ohio.
At one time, Garrett and his father Tom, a retired Army Veteran who served in both Desert Shield and Desert Storm, made the journey as often as once a week for one month, and then traveled there every three weeks.
To drive or fly that distance so often would be time-consuming and expensive, so Garrett and his father are thankful that Angel Flight® provided the frequent lifts needed to transport them to Cincinnati. Tom said his son was “apprehensive at first” about flying, but that Garrett “is getting used to it,” and that the pilots have been helpful and friendly.
André Hawkins is the Clinical Research Coordinator in the Division of Gastroenterology, Hepatology and Nutrition at the hospital, and he realizes what a huge role Angel Flight plays in Garrett’s treatment. Garrett and other children enrolled in clinical studies “wouldn’t be able to participate otherwise,” notes André.
Angel Flight gets Garrett where he needs to be—and back home again. |
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