by Marie Vesley, AFMA Volunteer Writer
[Photo depicts Angel Flight pilot Charlie Poll and his little buddy, Josh]
Joshua, 10, is an active and happy fifth-grader who does well in school and loves playing golf. In his short life Joshua and his family have faced a great many challenges and have been regular users of Angel Flight services.
As a result of rare congenital medical conditions known as Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis, Josh’s kidneys and liver have never worked properly. He has cysts on his kidneys which result in impaired kidney function and hypertension controlled by medication. Josh’s liver is affected by fiber-like connective tissue which also causes bleeding in his esophagus. At some point, he will be a candidate for a transplant.
With all this going on, Josh must be seen frequently for specialized medical care in cities far from his Evansville, Indiana home. Approximately every four months he and his mom, Kim, make the trip to see liver and transplant specialists at Children’s Hospital of Pittsburgh. They are usually there for several days of tests and procedures. In addition to these trips, Joshua and his mother make quarterly trips to Birmingham, Alabama to see kidney specialists.
Kim learned about Angel Flight while sitting at a local softball game about two years ago. Since then Angel Flight has been helping Josh and Kim make their flights to Pittsburgh. Calling it a “true blessing,” Kim credits this assistance with cutting down substantially on their travel time and on the wear and tear on their family. The pilots– Charlie, Tony, David and Vince— have been wonderful. “They are fabulous, and I love all of them,” Kim enthused in a phone interview.
Kim reported is a full-time mom who substitute teaches when her son’s medical appointment schedule allows. Her husband, Tom, works in the golfing business in Santa Claus, Indiana – yes, there really is such a town! Joshua’s sister Victoria is 11 and also a golfer. Kim reports that managing Joshua’s medical issues is especially hard on Victoria. Earlier this year the whole family got to go on a golf vacation to Pebble Beach, California through Make a Wish Foundation. A dream fulfilled for a family of avid golfers!
Angel Flight stands ready to assist Josh and his family with future flights when needed, providing “the shortest distance between home and hope.”
Dear Angel Flight Mid-Atlantic,
I want to take this opportunity to express to your organization our family’s gratitude for the service you provide to children like our son, Junjun.
Junjun was adopted by us in 2008, from China. He had been in a house fire there, and has resulting burns over 70 percent of his body. Since arriving home, he has been undergoing treatment at Shriner’s Burns Hospital in Boston. Until we found out about Angel Flight, we were driving to Boston for treatment and medical check-ups—over 1,000 miles each round trip. The cost and loss of work time was beginning to take its toll.
We now are able to continue Junjun’s treatment with a substantially reduced cost, thanks to the Angel Flight organization, and the devoted pilots who selflessly give of their time to make these flights possible. It is not possible to put into words how our family appreciates what you are doing for our son.
My son and I took our first flight on May 12, 2010, to Boston. The coordination of the flights could not have been more pleasant. MaryJane Sablan (director of flight coordination) continuously kept us updated, and the pilots were simply professional and caring.
I have told many people about Angel Flight…We will continue to express to people our feelings of gratitude. Please accept our heartfelt appreciation for everything.
Sincerely,
Jack M.
Words cannot begin to describe my thankfulness to Angel Flight and all who are involved in this charity.
Twelve months ago I was terrified as to the outcome and complexity of getting a liver transplant, not to mention the fact that I had to get from the middle of Michigan to Rochester, Minnesota, in record time. Everything had to be synchronized—from the moment the hospital received the liver to my arrival within two hours.
Well, it’s been three months since I got “the call” from Mayo Clinic saying they had a liver waiting for me! It was pretty emotional for me and my family because there were so many times that we did not know if I would ever have the transplant or be healthy enough to endure the wait. What made it even more divine was the fact that the day they called me was also my birthday. I could not have been given a more perfect gift.
I want to thank you for being an intricate part of my transplant. Angel Flight is all that your name implies and far more. From the pilot who unselfishly donated his time, to the people who took the call to set everything up, this would not have succeeded if it weren’t for their generosity and kindness. Thank you for taking time for another and giving me a second chance at life. May God richly bless Angel Flight…a place in Heaven is reserved just for you!
Gratefully,
Larry B. and Family
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.
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.”
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.”
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.
