Michelle James
Register-Herald Reporter
March 18, 2007 11:33 pm
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Though they say X-linked Lymphoproliferative Syndrome affects less than 100 families worldwide, a Rock Creek family has been hit by it not once, but twice as both their 15-year-old and 7-year-old sons have been diagnosed with the hereditary disorder.
“It’s like winning the lottery,” said Chris Stump, father of Franklin “Matthew,” 7, and stepfather of Troy Mitchem, 15. “Only, it’s a lottery you don’t want to win.”
Matthew and Troy were diagnosed with the syndrome just a few months ago, but, unbeknownst to the family, the disease first reared its head six years ago, when Troy, then 9, was diagnosed with lymphoma.
After two months of chemotherapy and surgery to remove the tumor and part of his intestine, Troy went into remission and, according to his mother Kelli Stump, has had nothing more than a cold in the years since.
About a year and a half ago, however, younger brother Matthew, then 5, fell ill and began experiencing seizures. After multiple hospital visits, including an extended stay in the intensive care unit at CAMC, doctors suggested his parents take him to Children’s Hospital in Cincinnati.
Chris Stump says doctors in Cincinnati treated Matthew for a lung disease for five or six months before he was finally diagnosed with Lymphoproliferative Syndrome, an immunodeficiency disorder characterized by a defective immune system.
“It’s where the body doesn’t take care of bad cells,” Stump explained. “If I get a cold virus, it will last two or three days. If he gets a cold virus, it never goes away because his body doesn’t fight it.”
After Matthew was diagnosed with the syndrome, doctors tested Troy as well and found that, though apparently healthy since recovering from cancer, he too has the disease.
“Troy’s been very, very lucky,” Kelli Stump said. “It’s hard to believe he’s so sick.”
Though Troy, a sophomore at Liberty High School, has shown no symptoms of the disease, it has spread throughout Matthew’s body, forcing the Stumps to make weekly trips to Cincinnati so he can receive treatment during which he receives donor white blood cells.
Troy undergoes the same treatment every four weeks and both brothers are now awaiting bone marrow transplants because the Stumps say the disease, which is often fatal, will eventually cause lymphoma.
“This is the only treatment,” Chris Stump said.
If all goes well, the Stumps are hopeful Matthew’s transplant, which will consist of 11 days of high-dose chemotherapy to kill his bone marrow, followed by the actual transplant, will take place in April.
“He’ll have a CAT scan and spinal tap in a few weeks,” Kelli Stump said. “If everything looks good, they’ll start on him and Troy will start six months later.”
Traveling back and forth to Cincinnati has not been easy on the Stumps, as Chris, a retired Raleigh County Sheriff’s deputy who went back to school after he was injured on the job, has been at his new job as an X-ray technician at Beckley Appalachian Regional Hospital for less than one year.
“It’s been hard,” he said. “My co-workers have donated their vacation days to me so I could have time off. I couldn’t have made it this far without them.”
Though the donated time has helped the family make it to this point, when Matthew and Troy receive their transplants, they will remain hospitalized in Cincinnati for at least three months.
The Stumps say they are not sure how they will make it when the time comes, but say they are extremely grateful to family members, friends and strangers who have helped them thus far.
“We appreciate everything everybody’s done,” Kelli Stump said. “There’s been a lot of support and prayers.”
This is not the first time a rare disease has struck someone in the Stumps’ extended family, as McKenzie Mitchem, daughter of Carla and Grant Mitchem, Kelli Stump’s first husband and Troy’s father, has battled her own illness in Langerhans Cell Histiocytosis.
During the summer of 2005, McKenzie was preparing to receive a double lung transplant, when her lungs unexpectedly began rejuvenating.
Since then, she has returned home and, according to her parents, a transplant is not on the near horizon.
Kelli Stump says she is hopeful that, like McKenzie, Troy and Matthew will receive their own miracles.
“We just want everything to go well,” she said.
Sister Laken Mitchem, 13, echoed her mother.
“I just hope they get better and get to come home,” she said. “There’s nothing without them.”
A trust fund has been established to help cover travel and medical expenses.
Donations may be mailed to: The Franklin Stump Trust Fund, c/o Chris Stump, Whitesville State Bank and Trust, P.O. Box 68, Whitesville, WV 25209.
— E-mail:
mjames@register-herald.com
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