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 Mercy Medical Airlift. Ashly called and got a flight. “We were just amazed, especially at how quickly MMA 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 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.”

After undergoing a double mastectomy in January, she was able to get an appointment at the Arlington Cancer Center for January 26. “We contemplated driving to Texas, but my wife was not able to make the trip on the road,” Duane said. The American Cancer Society referred them to Mercy Medical Airlift, and a flight on Delta airlines was arranged within a week’s time. Still weak from her surgery, Shirley needed a wheelchair and an escort to get her from one gate to another. “I have never seen so many people work together to take care of a hurting person, both physically and mentally. The return trip on January 30 was equally comforting,” Duane explained.

During her time in Arlington, Shirley underwent a battery of tests that fortunately failed to detect any additional cancer in her body.  She is currently taking chemotherapy treatment back home and will return to Arlington in June for additional tests and to set up her radiation schedule. Mercy Medical Airlift stands ready to help the couple again with future travel “as long as the resources are available,” said mission director Dannie Ducksworth.

“I have outlived my prognosis of six months by seven and a half years because I am able to travel through your service,” said Alice.

Alice, 55, uses Mercy Medical Airlift to fly from her home in Ohio to Arkansas, where she receives treatment at the Winthrop Rockefeller Cancer Center. In 2002, after a series of physical problems and the task of caring for her mother who had suffered three strokes, she was diagnosed with nonsecretory multiple myeloma. This is a rare variation of multiple myeloma, a cancer of the plasma cells in bone marrow. With nonsecretory multiple myeloma, the body fails to secrete a protein, and the bone marrow looks normal, allowing the myeloma to travel through the bones undetected.

Shortly before her mother’s death in 2001, Alice began to see signs of her illness. She started having shoulder pain and sought medical help. The doctor told her that all of her tests showed up fine and prescribed Vicodin. The pain grew worse.

“Eventually the pain was so bad I took eight at one time and the pain was never touched by it.”

As the pain worsened, Alice asked to see an orthopedic surgeon. For almost a year she received a cortisone shot every couple of weeks, but the pain remained.

After that, her right hand swelled up, and she went to her clinic doctor thinking she had arthritis. Her doctor laughed at the idea of arthritis and took an x-ray of her hand. By the time she arrived home, there was a message from her doctor to call immediately. She was told she had a fracture in her wrist and hand, and was instructed to see the orthopedic surgeon. Full body x-rays were taken and the doctor showed Alice the film.

“The doctor came in and shot up one X-Ray and said, you have a tumor here, here and here.”

A tumor had eaten through her wrist. Nonsecretory multiple myeloma was diagnosed.

She underwent seven months of chemotherapy and traveled to Cleveland Clinic in Ohio for stem cell transplants. This caused her to be away from home where she cared for her brother, who has Down’s Syndrome, her foster son who was severely brain damaged, and her biological son who was just starting high school. She kept in touch with her family and talked to her son three times a day.

“One of those calls he pleaded with me, saying ‘Momma, you can’t die. Please don’t die.’”

Once Alice was eligible for Medicare, she headed to the University of Arkansas for Medical Sciences (UAMS), the top research facility for myeloma internationally. She travels to UAMS every year, where they have stocked up on her stem cells in case of a relapse.

At UAMS she found out about Mercy Medical Airlift.

“The people who work for MMA are not just providing transportation,” she said. “They are the steady voice that gives you courage when you are alone and away from home.”

Alice, awaiting her son’s graduation from college this December, is still making progress with her illness, but the road is tough. She receives a small disability check and faces a foreclosure on her home. Thanks to MMA she is able to continue traveling to Arkansas for her treatment.

“They work miracles in their own way. They save lives.”

They came with their dad, Bobby, to Virginia Beach on September 22 to attend the evening premier of the new documentary, Mercy Medical Airlift: Compassion Takes Flight. Mercy Medical Airlift is the parent organization of Angel Flight and the other charitable air transportation programs operated out of the Virginia Beach headquarters where the film was screened to an audience of some 30 people.

Besides the three handsome young Angel Flight passengers, other notable guests were Dr. and Mrs. Donald Nuss. Dr. Nuss is interviewed in the film and explains, in a moving segment, how he developed a procedure to correct pectus excavatum, or “sunken-in chest.” Angel Flight transports many patients to Children’s Hospital of the Kings’ Daughters in Norfolk to be treated by the internationally-renowned pediatric surgeon.

Dewayne Rudd, president of Cross and Flag Productions, also attended the premier of the film he and his nonprofit group created over a period of over eight months. Rudd is a UPS pilot from Kentucky who donated Compassion Takes Flight as a gift to Mercy Medical Airlift.

Oren Liebermann, a reporter with a local NBC affiliate, WAVY-10, covered the event and arranged to have it broadcast later on the evening news.

To commemorate the documentary and recognize MMA’s 25^th anniversary, being celebrated this year, Mayor Will Sessoms signed a proclamation designating September 22 as “Mercy Medical Airlift Day” in Virginia Beach. After reading the proclamation aloud to the audience, the deputy city manager, Suzy Walston, presented the document to Ed Boyer, Mercy Medical’s president and CEO.

Highlights from the hour-long film included a segment on aero-medical history, Tangier Island, and interviews with patients, pilots, staff members, and coverage of the fundraiser for the veterans program, Halos and Heroes with Charlie Daniels. Compassion Takes Flight is being shown on hundreds of public, educational and government access TV channels throughout the United States, including stations in Hampton, Norfolk, and Gloucester.

The bubbly little girl is in very good health compared to other children with Down’s Syndrome. However, her optical complications require special attention. Doctors have recommended surgeries and glasses, but an osteopathologist in San Diego treated Chana a little differently.

Osteopathology is a treatment utilizing manipulation where doctors put their hands on the patient and work with bone movements. Dr. Frymann, Chana’s osteopathologist in San Diego, has had marked success in improving her vision. Chana’s father, David, said within two weeks they noticed positive results with both her vision and cognition. She has also been answering questions much more quickly since their return home.

“She’s holding onto her improvements,” David said.

Previous treatments had shown positive results for a couple of weeks, but Chana would always regress back to her complications.

David, who accompanied his daughter on the flight, says he heard about Mercy Medical Airlift through an organization he had previously worked with called Miracle Flight.

“It was one or two days later and we had our itinerary. It was shocking,” he said. “It was so easy and fast, it couldn’t have been any better.”

David says he accompanies Chana at her appointments while his wife stays home with their other three children.
On the plane, Chana watched her favorite DVD, an alphabet learning program called “Love and Learning” made especially for special needs children. She also colored with her crayons on the flight, and her father said she was up and down and walking around the aisle.

Fortunately, David has found a doctor closer to home who uses the same techniques as Dr. Valenti, the vision doctor in California. Dr. Wiener practices in North Island, New Jersey. He attended school with Dr. Valenti, who has given him instructions about Chana’s condition.

David, too, is given instructions for home exercises with Chana. She will look at objects close up and then at a distance, as a kind of eye training method, her father said. Chana also sees another osteopathologist in the Bronx once a month.

David says without help from Mercy Medical Airlift, Chana would not have all the opportunities she needs to develop into her potential.

With the high prices of airfare, he said Mercy Medical’s provision of flights is a huge help. “The flight gives us the opportunity to go to California as often as Chana needs. Without the help, we wouldn’t be able to do it. We really appreciate it.”

Some 63 people attended, most from metro Washington, D.C. Volunteer pilots, board members, a patient and her family, staff members and friends enjoyed visiting during a reception followed by an excellent meal and program emceed by Edward Boyer, an MMA founder and the organization’s CEO and president.

Boyer introduced Camille Cormier, one of the first patients flown in the Cessna 421 air ambulance. The lone survivor of an airplane accident in California, Camille suffered extensive injuries and was transported by volunteer pilot Harvey Engen. With emotion, she told of the pain of losing her brother, who was flying the aircraft when it crashed, killing him and two other passengers. She also expressed her deep gratitude for Mercy Medical’s gift of flight.

The keynote speaker was board member Col. Randy Brandt, USAF (Ret), who reviewed MMA’s long, illustrious history, weaving in biblical verses related to helping one another that illustrate the charity’s impetus for service. Brandt interspersed his remarks with segments from the compelling new documentary, Mercy Medical Airlift: Compassion Takes Flight by Cross and Flag Productions that is soon to be released. Copies may be obtained with a donation to MMA. (Read the synopsis at the end of this article.)

Several tables lined the banquet room displaying various programs offering medical air transportation: Angel Flight, Air Compassion America, Mercy Medical Airlift and Air Compassion for Veterans.

For those who have advanced Ed Boyer’s vision of making sure no patient is denied access to distant, specialized medical care because of lack of funds for transportation, the evening was memorable and meaningful. “Seeing the faces of so many friends and dedicated supporters made our 25th year celebration special in every way,” Boyer said. “It’s been the Lord’s work from the very beginning.”

Mercy Medical Airlift: Compassion Takes Flight

“Hope is what we’re all about,” says Jim Smith, an executive with Mercy Medical Airlift. This national charity and its dedicated programs provide a service most Americans are unaware is even needed: patient travel. In Compassion Takes Flight, you will discover, for example, that 10 percent of our population suffers from rare diseases requiring specialized treatment far from home. Mercy Medical Airlift provides charitably donated airline tickets for such patients. Other patients in need travel for free on Angel Flights.

In this inspiring, hour-long documentary, take a virtual trip in a private aircraft with a volunteer pilot and patient from a small island in the middle of the Chesapeake Bay to a medical center on the mainland. With no advanced treatment available on Tangier, islanders rely on Angel Flight to give them access to vital medical care. Meet Dr. Neil Kaye, a pilot, psychiatrist and Tangier resident who says the Angel Flights are “God’s work.” You’ll meet Dr. Donald Nuss, a pediatric surgeon from Children’s Hospital of the Kings Daughters in Norfolk, Virginia, who pioneered a procedure to correct “sunken in chest,” or pectus excavatum. Many of his patients rely on Angel Flight in order to travel to Norfolk.

You will learn about other operations of Mercy Medical Airlift, including a national call center, an air ambulance program, and a service for military patients and families, Air Compassion for Veterans. To raise funds, Air Compassion for Veterans featured the Charlie Daniels Band at an event called Halos and Heroes, along with an honors ceremony for veterans and service members. The film’s patriotic finale will stir your emotions and highlight the generosity of America the Beautiful in organizations like Mercy Medical Airlift that are doing God’s work in a hurting world.

Dr. Peter W. Stacpoole directs the study, which utilizes the drug Dichloroacetate (DCA) to help reduce acidity and which seems to improve neurologic function. The twin girls, now 15, started taking trips to the University of Florida Research Center in Gainesville when they were two years old. Through its Child Lift program, Mercy Medical Airlift has provided free air transportation for Ashley and Amber and most of the other 42 children participating in the trial since 1995.

Ashley and Amber live in Las Vegas, Nevada. Their mother, Gina, says that without the drug DCA and Mercy Medical Airlift, the twins wouldn’t be alive today. Though Ashley can’t walk or talk and both girls are in wheelchairs, they are mainstreamed ninth graders and “very happy”, according to their mom.

Since that first child lift, MMA has been contacted to provide charitable flights related to 120 studies throughout the United States.

Richard is 72 years old and with his wife lives on Social Security and a really small pension. Multiple round-trips via the airlines to Seattle was out of the question. There simply were no funds to pay for tickets. The 10% senior citizen discount didn’t make much difference.

Resources obtained through the Mercy Medical Airlift Charitable Airline Ticket program provided funds to obtain airline tickets leaving from Philadelphia for the west coast. A volunteer pilot organization then arranged for a private aircraft transport from upper New York State to Philadelphia and return. Richard is doing well with his bone marrow transplant.