It is unlikely that six-year-old Brian Dorsey of Evans will ever climb Mt. Kilimanjaro, but through stories and pictures, it will feel like he's been there.
Brian was diagnosed with juvenile dermatomyositis when he was just three years old. The disease is characterized by muscle weakness, fatigue and discomfort.
Eventually, some patients with the disease have difficulty rising from a sitting position, climbing stairs, lifting objects or reaching overhead. That's why it's certain Brian will never climb Mt. Kilimanjaro.
"It hit Brian so quickly," said his mother, Cari Dorsey. "He literally went to bed a healthy child and woke up with this grave illness. I knew in the pit of my stomach that it was something more than a minor illness. I knew this would be the one defining moment that would change our lives."
Jeffrey and Cari Dorsey were living in Charlotte, NC, with their children - daughters Shelby and Karsyn, and son, Brian - at the time their son was hit with the disease.
"Brian's diagnosis happened so quickly that in three to four weeks, he couldn't walk anymore," said Mrs. Dorsey. "He couldn't pull up his own sheets."
Brian Dorsey, 6, cuddles up with his sisters Karsyn, 9 (left), and Shelby, 10. Ben Moye signed a Kilimanjaro poster to commemorate his climb.
Photo by Jim Blaylock
Brian was initially misdiagnosed, but a muscle biopsy exposed the real culprit as juvenile dermatomyositis. After their move to Augusta, the family contacted Dr. Rita Jerath at the Medical College of Georgia.
"We were initially told it would take his life by the age of 30," said Mrs. Dorsey. "We now know that's not true."
In a crusade to educate others, including physicians, about dermatomyositis, Dr. Laurel Colton of Pasadena, Calif., organized a climb on Mt. Kilimanjaro to raise much-needed funds for research on the disease.
"Dr. Colton organized the climb and in doing so, wanted to match each climber with one patient," said Mrs. Dorsey.
There enters 40-year-old Ben Moye of Gray. Moye was looking on the Internet for information on Mt. Kilimanjaro when he came across the Kili Climb for a Cure.
"I saw the Web site and thought that I could do what I wanted to do while helping someone else," said Moye from his Jones County home. "My dream has always been to climb the seven summits of the world and I wanted to start with Mt. Kilimanjaro."
After confirming that the Kili Climb for a Cure fundraiser was legitimate, Moye set out to train for the grueling six-day climb.
"It was an awesome experience," he says of the July 20-25 climb. "It was a chance of a lifetime. It was a big mountain and I think most of us underestimated how big it really is."
In addition to Moye, six other climbers took to the mountain to raise nearly $73,000 for dermatomyositis research. And, a relationship between a young boy and his mentor quickly formed.
"I really like the family," said Moye of the Dorseys. "They are good people. We just bonded the first time we met. I really like Brian a lot."
Today, Brian is a first grader at Riverside Elementary School and is back to riding his bicycle.
"At this point in time, he's able to walk and able to play," said Mrs. Dorsey. "After 28 months of intense steroid treatment, he's doing great. He has fluid in his hip joint that could eventually lead to arthritis, but he's doing very, very well. I keep asking when can we breathe a sigh of relief and close this chapter on his life and the answer is never. This is a chronic disease and he will always have it."
Brian is a success story, but Mrs. Dorsey is adamant that more healthcare providers need to be educated about dermatomyositis.
"We were helped very, very quickly," she said. "The faster this disease is treated, the better chance the patient has. It affects every single aspect of your life. There's no reason anybody with the disease can't end up like Brian. Research is the key."
And while Mrs. Dorsey says the money raised by the Kili Climb for a Cure is great, the "awareness the climb has raised is fantastic. Ben's just an amazing man and Brian thinks he is the coolest. When Ben got to the top of Mt. Kilimanjaro, he called Brian. We've formed a friendship with Ben and we hope it will last forever."
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