WHEN THEIR only child was in kindergarten, Russell and Nancy Boone learned from an alert teacher that something was not quite right with their son, Russell.
Tests revealed that R. J., as he is known to friends and family, had Duchenne's muscular dystrophy, the most common form of muscular dystrophy, which almost exclusively affects males.
The Boones' world was suddenly torn apart. They found that their child's life expectancy was only 21 years and that the disease would slowly destroy his muscles.
Now, at 15, this bright young man is struggling to keep a tough mental outlook as he faces one complication after another.
"He woke up on Christmas morning with a temperature of 101 degrees. From there, things went downhill," Mrs. Boone said.
A pulmonary specialist diagnosed R. J. with pneumonia, and then they found that his right lung had collapsed. He was admitted to Mount Washington Pediatric Hospital eight weeks ago.
As complications have mounted, R. J.'s bright outlook has faded. The wound from a steel rod placed in his back over a year ago still has not healed, and doctors have found ulcers peppering his esophagus and stomach.
He has had trouble swallowing and has had to be monitored for sleep apnea. He became depressed and refused to eat. A feeding tube has been inserted.
Neighbors in R. J.'s Pleasant Valley community have joined to raise funds to bring him home.
The walls of his room are plastered with cards and letters from relatives, friends and classmates at Westminster High School, and R. J., his weight holding steady at 68 1/2 pounds, is beginning to smile again.
"He thinks what the neighbors are doing for him is really cool," Mrs. Boone said. "We sure are grateful, and R. J. just wants to come home."
Teri Moorefield, a Pleasant Valley neighbor and friend, is spearheading the fund-raising effort.
"I think this touches home. I have a 20-year-old son and a daughter who is the same age as R. J.," Moorefield said. "I felt someone needed to do something. The overhead is so great, there is no way they can do it themselves."
Moorefield, who works at the Four Seasons Sports Complex near Hampstead, spoke to the owners about helping her out.
A plan was devised to use the new miniature golf course to help raise funds. The community is selling tickets to play golf at Four Seasons. For each $5 ticket sold to play a round of golf, $3 will be donated to R. J.'s fund.
"There is so much expense to his home care," Mrs. Boone said. "He needs a special bed that is air-fluidized and bounces him on [rotating] beads [to prevent bed sores], the feeding pump and formulas, a portable pump for his wheelchair and home nursing care."
R. J., an honor student since sixth grade, gets around in a state-of-the-art wheelchair provided by the family's health care provider, Blue Cross and Blue Shield of Pennsylvania.
He likes to build things, read joke books and play electronic games.
Mrs. Boone stays with him almost full time at Mount Washington Pediatric Hospital in Baltimore, while her husband commutes to his job in Gettysburg, Pa., where he works for Keiffer Auto and Truck Repair. He visits on weekends.
"I want people to know that this [fund-raiser] is for real and not some scam," Mrs. Boone said. "Every bit of anything anyone donates will go completely for R. J. and his care."
For tickets or more information, call Moorefield at 410-239-3366, or 410-848-9375.
Students win big
"Promoting America: An Awesome Challenge" was the theme of the recent American Legion Auxiliary essay contest. It was open to children in grades three through eight.
Congratulations to these winners:
Among third- to fifth-graders, Corinne Conrad, Charles Carroll Elementary, first place; Samantha Pyzik, St. John School, second place; and Amanda Martz, Charles Carroll, third place.
Among sixth- to eighth- graders, Meghan L. Gierhart, West Middle School, first place; Nicole Kerkam, New Windsor Middle, second place; and Brendan Reed, West Middle, third place.
Lois Szymanski's Central Carroll neighborhood column appears Mondays in the Carroll County edition of The Sun.
Pub Date: 5/27/97