Saturday, July 27, 2013


Three summers ago, my grandson Joel, who is now ten, and my daughter Elizabeth traveled from California by train to visit with me in Sewanee, Tennessee. Joel stepped off the train at Birmingham, Alabama with a fever of 102 degrees, smiling wanly, and his mother informed us that he had contracted a virus during the three-day train ride. After we reached Sewanee, we put Joel to bed, and I awakened during the night when I heard him coughing in the next room. He said to me, with an almost-adult resignation, “I’m always sick.” The following morning after his arrival, he complained of not being able to feel his feet and said that he couldn’t walk. “The doctor says he has growing pains, and everyone else says this also,” Elizabeth explained, but nonetheless, we were alarmed. I rubbed his legs and feet with Biofreeze and set him up to watch cartoons for a day or so. Joel was a real sport about this mysterious malady, and when he vowed that he felt better, we set off for Gatlinburg to spend a week at a mountain resort. After a few days he rallied and even went swimming several mornings in a heated pool. By the time he and his mother left Tennessee, he seemed to have overcome the virus that had caused him to be unable to walk for a few days.
Joel came into the world as a preemie, and his mother suffered preeclampsia before she delivered him. He has always had a small frame and inherited the family allergies, including asthma, but none of us were prepared for the diagnosis that he received a few months after returning to California from his Tennessee visit. Pediatric doctors at the University of California in Los Angeles determined that Joel has the chronic, non-communicable disease of juvenile arthritis, a disease that lasts forever. Thank God his mother home schools him, and he’s able to catch up with his schoolwork after he experiences episodes of this condition. During an episode, he often has to resort to the use of a wheelchair because his ankles and knees are swollen, and if he puts pressure on these swollen places, he could permanently damage his joints. Despite these episodes, Joel remains a cheerful ten-year old with a lively interest in lizards, snakes (he’s the one who owns a corn snake), swimming in the backyard pool, basketball, and storytelling, but he often laments that his handwriting isn’t up to snuff because his wrists are so swollen he can’t form letters properly.
Recent findings about juvenile rheumatoid arthritis indicate that almost 300,000 children in the United States have been diagnosed with this disease and it's at the top of the list of chronic childhood diseases – the onset of it claims more victims that juvenile diabetes, cystic fibrosis, and muscular dystrophy combined, which is a formidable and alarming statistic.
The alarming factor is that pediatric rheumatoid arthritis diseases don’t receive research funding at the federal level or through private institutions that can compare with research funding for other childhood diseases. Leukemia, juvenile diabetes, muscular dystrophy, and cystic fibrosis receive hundreds of millions of dollars funding for research purposes, while pediatric rheumatoid arthritis disease research receives only two million dollars yearly!
The message is that one of the pediatric diseases that afflicts 300,000 U.S. children (1 in 250) is a disease more prevalent than the diseases I mentioned above, but it’s severely underfunded by research agencies nationwide. I’m writing this because I hope that other mothers and grandmothers whose children and grandchildren suffer from this juvenile condition will write to their congressman or other governmental official and request that they back funding for research to discover a cure for this autoimmune disease, or that those parents and grandparents will write to the Juvenile Arthritis Association to find out how they can help raise awareness about the need for research.

We’re hoping that when Joel comes for another visit, his mother won’t have to unload an entire suitcase of medications or that he doesn’t show up with a raging fever and unable to walk so that he can enjoy visits with his relatives in Louisiana and Tennessee… better still, we hope that one day he won’t have to be reticent about signing his name because his handwriting bears out the severity of a juvenile disease that was overlooked or because most people thought he had “growing pains.” 
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