Good Teachers
When I interview patients for a newsletter or web article, I usually come away uplifted. Why is this so? You would think a person with an incurable disease or the parent of a child with multiple disorders would be depressed, bitter, angry. Certainly those emotions are present in all journeys of pain, but there’s a difference between experiencing negative feelings and being shaped by them. People whose lives are shaped by grace warrant my attention. They strengthen me with their sense of gratitude and their courageous determination to live as normally as possible. They are good teachers.
Here are two.
Renee is a 52-year-old woman suffering from TRAPS, a periodic fever disease that is the result of a genetic abnormality. The acronym stands for Tumor Necrosis Factor Receptor Associated Periodic Syndrome. The disease is difficult to diagnose and manifests in a multitude of painful symptoms.
“I have the symptoms of 10 different diseases,” Renee said. “I was tested 32 times for lupus.” When she was finally diagnosed in 2002, she thought, “I’m strong. I can beat this.” But she reached the point where she was in so much pain that she couldn’t get out of bed. This led her to the National Institutes of Health (NIH) in Bethesda, Maryland, where doctors prescribed Enbrel, a drug given intravenously. It’s the primary treatment for rheumatoid arthritis but has been used successfully to treat TRAPS. She takes injections three times a week and says, “It’s made all the difference.” Mercy Medical Airlift provided a round-trip ticket to Bethesda for Renee and her husband, Tim.
Renee works for Lenscrafters as an optician. She says she tries hard “to be independent. I’ve always worked. You can’t give in. I watch other people [with the disease], and they become bitter and angry.”
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Jack and his mom, Heather, enjoy being up in the clouds.
Jack is a seven-year-old boy suffering from a rare bone disease called McCune Albright Syndrome As a result, his bones are fibrous, weak, and easily broken. Some activities, such as tackle football, are taboo. “We don’t treat Jack any differently,” his father, Paul, said. “If we treat him as if has a disability, he’ll think of himself that way.”
There is no treatment or cure for the disease, which is caused by a gene mutation.
Jack is enrolled in a natural history study at NIH that will help researchers learn more about the disease. They’ll follow him throughout his life. To help with travel, his parents contacted Angel Flight Mid-Atlantic , a program operated by Mercy Medical Airlift. They learned about the organization through a neighbor of Paul’s parents who is himself an NIH patient.
“This is our second year with Angel Flight,” Paul said. “Jack loves to fly. He falls asleep every time!”
The alienation that parents feel when their child is afflicted with a rare medical condition was eased for Paul and his wife, Heather, when they found connection with the Magic Foundation.
The nonprofit charity offers support and resources for parents of children with growth disorders. “It’s been a saving grace,” Heather said. “Our biggest base of support is other families with McCune Albright, especially boys who have it.”
During a recent four-day visit, Jack “went through it all, all day long, ” his mom said. In spite of the barrage of X-rays, scans, and needle pricks, her son “looks forward to coming here. He likes the game room, and he can order what he wants from the menu.”
She went on to note that her family “has had a good year.” She said Jack had broken his femur once and was unable to walk for an extended period. “It helps you keep in perspective what’s important in life. We ask people to pray for Jack and our family.”
