No child should have to endure the kind of suffering that six-year-old Kaylee T. has faced, but despite serious illness, the little girl from Gordonsville, Virginia “is a happy child in high spirits,” says her father and full-time caregiver, Jermaine.
Kaylee had just started kindergarten when one day in October 2014 she became violently ill and broke out in a rash. Her lips began to swell and blisters erupted inside her mouth. The condition quickly spread overnight. Jermaine called his wife, Daisy, and she immediately came home from work. They sped to the ER at the University of Virginia Medical Center 45 minutes away where Kaylee was admitted.
Continue reading “Despite Burns, She’s a Happy Child”
By Stephanie Singer, Intern, Virginia Wesleyan College
“He’s going to be his own prophet. He’s going to write his own book.”
These thoughts passed through Kristine’s head when she first held her son. She named her son Ezequiel, an alternate spelling of the biblical name Ezekiel. The name means “God’s strength,” a unique spelling reflecting the boy’s individuality.
At two years old, Zeq, as he’s called, weighed only 19 pounds and was severely malnourished. Doctors thought he had food allergies. Kristine disagreed; it was impossible to have allergies to every food.
She drove to Baltimore, Maryland, hoping another doctor could help her son. “We needed a fresh set of eyes,” she said.
At the hospital, an immunologist diagnosed Zeq with eosinophilic esophagitis, or EoE.
Eosinophilic esophagitis is a chronic immune system disease. It occurs when white blood cells build up in the esophagus and attack substances such as food. Complications include scarring and tearing of the esophagus, vomiting, and severe weight loss.
Angel Flight to the Rescue
After learning of Zeq’s diagnosis, Kristine went to some internet forums that she regularly participated in and asked if there was anyone who could help get them back and forth to Baltimore from their home in Virginia Beach, Virginia. She got an answer: Angel Flight.
The charity has been providing flights for Kristine and Zeq, who will be six in July, for three years.
Continue reading “Boy with Rare Disease Lives Up to His Name”
by Stephanie Singer, Intern (Virginia Wesleyan College)
Karen C. has a condition called myasthenia pravis. Trying to say it will twist your tongue. That was the least of Karen’s concerns. This condition rendered twisting, or any other motion, almost impossible.
Myasthenia pravis is an autoimmune disease in which antibodies attack the areas where nerves and muscles join. This causes limited mobility.
“The condition is difficult,” said the 54-year-old woman, who has trouble walking any further than the length of her kitchen.
One of the medications doctors prescribed was Prednisone. The drug is an immunosuppressant, meaning that it weakens the immune system. It is prescribed for diseases such as myasthenia pravis.
Continue reading “‘When I’m Flying I Don’t Feel Pain’”
By Marie Vesely, Volunteer Correspondent
It was like a day in heaven!
On a bright sunny September day a small plane is soaring down the east coast from Virginia to Florida, staying low so it will be easier for the passenger to breathe with her oxygen supply. She has brought the pilots and co-pilot cookies in special boxes she made herself, but it is apparent the pilots are flying this woman and her husband for no other reward but the joy of caring. “[You] could see the compassion in their eyes,” she said.
“It was like a day in heaven.” That is how Carol, of Newport News, described her Angel Flight trips last year from Virginia to Myrtle Beach and on to Jacksonville, Florida where she was to be seen in the Mayo Clinic. The flights are “the most incredible thing in my life next to giving birth.” (Carol’s daughter, Samantha, is now a sophomore in college.) It is an experience that Carol and her husband, David, who got to sit in the cockpit with the pilot on one leg, will never forget.
For Carol, 51, Angel Flight services were the bright spot in an otherwise challenging 2012. Diagnosed at 30 with mixed connective tissue disease, she never knows exactly where her disease will strike next or what other associated conditions will surface. Mixed connective tissue disease, a rare autoimmune condition, manifests itself with symptoms of several other diseases such as lupus and rheumatoid arthritis. It is generally characterized by swollen hands, muscle and joint pain, lung and breathing problems, fatigue and a feeling of being unwell. Carol says, “You never know what’s going to happen next,” and so she tries to live life as fully as she can.
In May/June 2012 Carol’s oncologist –she is being followed because of markers for multiple myeloma — became concerned about her extremely low oxygen levels. She had been feeling particularly tired and out of breath with very low energy, symptoms common with mixed connective tissue disease.
After a long summer on oxygen and steroids, she showed little improvement. A referral was made to Mayo Clinic in Jacksonville, which specializes in breathing problems. However, the family felt they could not afford the flight. Through her sister-in-law, Carol learned about Angel Flight and “within a couple of minutes” of calling, was told yes, that transportation could be arranged.
Carol is still humbled by the goodness and compassion of her volunteer angels, pilot Rob Barnhill with co-pilot, Jeremy and pilot, Todd Stief. “I could not believe there were people out there who were so wonderful!”