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Family, friends rally to help teen fight rare blood disorder
Erica "Rica" Snoey understands the importance of beating the odds. At just three months old, they stacked against her as she began a lifelong fight against a rare blood disorder -- a condition that kills 75 percent of its victims before they reached their third birthday. Her first battle against this disorder nearly killed her after it caused her esophagus and trachea to nearly constrict shut.
By age 4, doctors actually had a name for the condition that attacked the disease-fighting white blood cells and crippled her immune system. They diagnosed her with Chronic Severe Congenital Neutropenia, a rare blood disorder affecting approximately one out of every 100,000 people in the United States.
According to the Neutropenia Support Association, the disorder attacks specific white blood cells known as neutrophils (pronounced new-troh-fils). These blood cells surround and destroy bacteria in the body and defend against bacterial infections.
Rica and others diagnosed with this condition easily contract infections that often strike their lungs, mouth and throat, sinuses and skin.
Because of her weakened resistance to many forms of bacteria, she spent the first five years of her life unable to enjoy the simple pleasures of stepping outdoors. Her mother, Amanda, spent those days constantly reading to her little girl, which allowed Rica to learn to read well before others her own age.
Even when she was strong enough to safely travel outdoors, she needed to wear a face mask to protect her from bacteria that most people have long developed a resistance against.
Treating this condition requires a transfusion of bone marrow from a suitable donor. At first, the odds once again seemed to go against Rica as tests showed that marrow from most of her direct relatives wasn't close enough to work.
Then came the breakthrough -- the advantage she needed to beat these odds. Bone marrow taken from her younger brother, Jared, was compatible.
"I was the only one that matched her enough that there was the least possible chance of complications," Jared said. "All three tests show that I cooperate with her (medically) all the way."
"He was the perfect match for me," she added.
In January, the 19-year-old hopes to beat the odds once and for all as she begins her first major battle against the disorder that has dominated her life for so many years. Rica, Jared and other family members travel to Ann Arbor, Mich., to start her treatment at the University of Michigan Comprehensive Cancer Center. The medical center is home to the nation's leading experts in fighting the rare condition.
Rica describes the treatment as a "super-intensive chemotherapy" aimed at killing all of her own bone marrow. This step is crucial before she receives a transfusion from her brother. If any of her existing marrow remains, it could fight her brother's healthy marrow and cause deadly side effects.
"We're doing this (treatment) to prevent that from happening," she said.
To prepare for her treatment, Jared must undergo surgery so doctors can extract sufficient quantities of his own bone marrow to replace his sister's. The procedure includes drilling about 100, quarter-inch holes into his bones to get at the marrow, said Jared, holding up his fingers to show how big these holes must get.
However, because of his athletic condition, doctors expect Jared's bones to fully recover from this procedure within two weeks.
"Actually, I was glad it was me because my brother's afraid of needles," Jared said. "I'm just glad that I can help her out."
In recent weeks, Rica's battle to beat the odds became a rallying cry of sorts as family and friends sought ways to show their support. Her younger brother, Nathan, took it a step further.
"Since I have to go through chemotherapy, he said it was better for me to shave my head versus watching all my hair fall out," she said. "But then he asked, 'Why not go with a Mohawk and funky hair colors instead?' "
That show of solidarity and support quickly gained momentum. As Rica opted to shave off the hair from the right side of her head and dye the remaining strands purple, her brothers and sisters tried similar hairstyles. Jared opted for a short-cropped Mohawk with green and purple highlights.
"He talked me into it," Rica said regarding Nathan's idea.
After the transplant, Rica expects to spend five to eight weeks in the hospital followed by another six to 12 months of follow-up care. Her condition following the procedure remains so delicate that doctors will prohibit her from living anywhere outside of a three-minute drive from the hospital during her initial recovery.
"I'm pretty much super stressed out," she said. "The thoughts of having to relocate (to Michigan) and not knowing the outcome is pretty scary."
In addition to battling the disorder, Rica faces an equally daunting fight --finding ways to pay for the $75,000 in initial treatment expenses.
"That's if all goes well," said Rica, adding these expenses could go higher if she develops complications. These bills don't include other expenses like housing and needed medications.
Hearing her call for help, local banks and businesses owners stepped up to provide support. In November, the Mountain Home Auto Ranch donated its space to host a Masquerade Benefit Gala for Rica that included live and silent auctions, dinner, music and dancing to help raise money for her upcoming treatment and recovery. Businesses like Charlie's Place and Manhattan Bistro stepped forward to provide food and beverages for the event or helped cook the meals.
Meanwhile, Taco John's in Mountain Home raised an additional $510 during its "name on lights" campaign. According to store owner Carolyn Strom, the restaurant collected donations from customers and employees from Dec. 1 to 21. Names of those donating money for Rica's cause were printed on small cardboard cutouts of Christmas lights that restaurant employees taped to the store's three bay windows.
To date, efforts to raise money to pay for Rica's medical bills have reached $3,000.
"Lots of different businesses in town also came forward to help," she said. Times are hard for many people in the Mountain Home community, but she never expected the incredible level of support from so many people -- many of whom have never met her or know of her plight.
"This means so much to me and my family," Rica said.
"I'm glad to see everybody is helping so much," Jared added. "I just wish I could thank everybody in person."
If all goes according to plan, Rica knows her treatment is just the beginning to a long road to recovery. Along the way, she could face various complications, including a chance of developing leukemia -- a side effect linked to this type of treatment.
"It's still nerve racking, and I'm still scared, but (the doctor) knows what he's doing," she said.