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Cochlear Implant Changes Little Girl’s Life

By Candice Gindle, Intern (Virginia Wesleyan College)

Bianca, just over two years old, was born deaf. Her mother, Ashley, says she wasn’t deaf in the womb. When Bianca was born, her potassium and creatinine levels were “sky high,” causing doctors to believe that her kidneys led to her deafness.

Traveling the Distance

Before Ashley discovered Airlift Hope of America, she was driving about 500 miles (10 hours), round trip, to Bianca’s doctor’s appointments at Carolina Children’s Communic. “They got us to our medical appointments,” Ashley says in reference to Airlift Hope of America. She says this has helped to make things much easier on her, since she and Bianca must make this trip once every two weeks.

Overcoming Struggles

On her second birthday, Bianca received a cochlear implant in her right ear. She must go to Carolina Children’s Communic every two weeks to have the implant turned up. Her hearing in her right ear is now at fifty and, according to Ashley, it only has to be turned up two more times before Bianca’s left ear is at full hearing.

“She’s been through a lot since she’s been born,” Ashley says about her daughter. Bianca still experiences different struggles, such as having to bathe with an ear plug to keep her implant from getting wet, but her mother tells us that Bianca’s implant has helped her to lead a relatively normal life. She is capable of hearing and understanding people, and she can also say words such as, “Momma,” “bye bye,” “brother,” and “eat.”

“We’re getting there,” says Ashley. Bianca is scheduled to have her second implant in her left ear next year.

Candice is a rising junior at Virginia Wesleyan College in Norfolk, Virginia. She is majoring in communications with a concentration in film, and she also enjoys writing. During her internship, Candice hopes to gain more writing and professional experience. In return, she hopes to make a positive contribution to Airlift Hope of America.

Airlift Hope Pilot of the Year: ‘Every Flight Is Memorable’

Kenny Hardin, a Fayetteville, North Carolina, resident and business owner, is being honored as “North Carolina Pilot of the Year” at a Gathering of Eagles banquet sponsored by Airlift Hope of America.  The annual event— a sort of Oscars for the volunteer pilots—will be held in Virginia Beach. Airlift Hope of America Executive Director Jim Smith states, “It is important that we recognize the service of all our volunteer pilots, particularly our go-to pilots who have earned Pilot of the Year honors. If not for their dedication the cause, we simply could not accomplish our mission.”

free medical flight pilot of the yearHardin volunteers his time, services, and the use of his personal aircraft, to fly patients for specialized medical treatment at otherwise unattainable locations.  As the recession has worsened, many patients find that they are unable to afford the transportation to their medical treatment facility, such as Duke or Shriners hospitals.

Hardin’s many flights have included transporting children and adults who are terminally ill.

“Every flight is memorable,” Hardin said. “I make each patient take a picture and sign my book. When I’m having a tough day, I look through the book. It cheers me up.”

Hardin has been flying for six years. His interest in aviation was the result of a helicopter ride over the Grand Canyon. “After the ride over the Grand Canyon, I was hooked,” Hardin said. He took his introductory flight at Gray’s Creek Airport in North Carolina.

After hearing about Airlift Hope of America from his peers, Hardin decided to volunteer in the summer of 2007. “It’s a neat way to give back to the community, plus I enjoy flying. It’s a win-win situation.”

Hardin, like all Airlift Hope of America pilots, uses his own aircraft and pays for fuel, maintenance, and repair out-of-pocket. During 2009, Airlift Hope of America assisted 2,154 clients for a total of 1,284 flights. In North Carolina, Airlift Hope of America assisted 393 clients for a total of 244 flights.

Flights ‘A Godsend’ for Lupus Patient

No one knows how the word “lupus,” meaning “wolf,” came to be associated with the disease, but there is no doubt as to its ravening effects on the body.

Larry N., of Hendersonville, North Carolina, knows that only too well.

He and his wife, Cindy, ran a thriving plumbing business from their home, which was then in La Plata, Maryland. They were also new parents. Ryland, their son, was two months old. This was in 1999.

Not Flu but Lupus

When Larry, who ordinarily enjoyed good health, developed flu-like symptoms at age 32, doctors treated him with antibiotics. But his 104 degree fever continued.

Finally, his doctor diagnosed systemic lupus. With lupus, the immune system mistakenly attacks healthy cells and tissues.

Unfortunately, the doctor prescribed the wrong medicine, and Larry’s condition worsened.

“I had to carry him to the bathroom,” Cindy said. “Lupus affects you head to toe. His joints ached terribly. We didn’t realize the severity of his illness.”

Doctors Recommend NIH

With his fever still raging three weeks later, Larry was hospitalized. Doctors said his blood pressure was so high they feared he’d have a stroke and recommended he go to the National Institutes of Health in Bethesda, Maryland.

Cindy went home and looked up the number, then had the good fortune of speaking with one of the world’s leading nephrologists, Dr. James E. Balow, who told her it was “a miracle that I even answered the phone.”

Wrong Medications

After receiving a faxed report of Larry’s blood work, Dr. Balow said to bring him immediately to NIH and to refuse all medications since he was getting the wrong ones. He told her Larry was dying.

Returning to the hospital, Cindy signed for her husband’s release and insisted on driving him to Bethesda, nearly two hours away, despite a nurse’s prediction that he wouldn’t survive the trip.

‘Raw Hamburger’

On arrival, Larry was stabilized, then admitted to ICU. Diagnostic tests revealed extensive damage to his left lung which “looked like raw hamburger,” Cindy said.

Surgery was scheduled, but doctors said they doubted Larry would live even two more days.

We’ve Done All We Can’

He made it through the 12-hour surgery to remove the lung but had to be placed on life support. In the days following, Larry spiked fevers and underwent transfusions. When his right lung started to collapse, doctors told Cindy, “We’ve done all we can do.”

Cindy headed to the chapel and prayed fervently for her husband.

Forty-five minutes later, doctors said, “There is one thing we can try, though he could die.”

Blood Cleansing

The procedure is called plasmapheresis. It involves exchanging a patient’s blood plasma with a replacement solution.

After four days of this blood cleansing, Larry began to improve and finally woke up from a coma. He went into rehab “and had to learn to walk and eat all over again,” Cindy said.

On April 5, 2000, after spending nearly four months at NIH, he was well enough to go home, where he continued to improve. The family then moved to Hendersonville.

Secret of Strength

Larry takes Airlift Hope of America flights to NIH for regular check-ups. He currently travels there every three months to be treated by Dr. Gabor Illei at NIH. Dr. Illei’s research includes clinical studies in systemic autoimmune diseases such as lupus.

“Airlift Hope of America has been a godsend. Every pilot has been phenomenal,” Cindy said.

When asked, “What is the secret of your strength that enables you to keep fighting?” Larry replied, “Cindy and Ryland. I want to see our son grow up.”

‘No Other Way To Get There’

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 flights provided by Airlift Hope of America —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.”

Flying with Airlift Hope ‘Fulfillment of a Dream’

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 Airlift Hope of America 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 Airlift Hope of America,” Phillips said. “To get back in a plane was the fulfillment of a dream.”

Airlift Hope Helps Boy Fight ‘Silent Epidemic’

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 Airlift Hope of America 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 Airlift Hope of America plays in Garrett’s treatment. Garrett and other children enrolled in clinical studies “wouldn’t be able to participate otherwise,” notes André.

Airlift Hope of America gets Garrett where he needs to be—and back home again.

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