by Jennifer Sweeney, Outpost Staff
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In this package: Lorenzo's Oil burns bright for ALD Northern Nevada team makes dreams come true On the Web: |
Kevin is a terminally ill Reno boy who suffers from adreno leukodystrophy (ALD), a neurological disorder that is passed genetically from mother to son. The disease is so rare that Kevin and his brother Brian, 10, who is so far only a carrier, are the only two boys in the state who are carriers of ALD.
Sue Karon, a Make-A-Wish volunteer of four years, headed the team who plan to grant Kevin's wish.
"Kevin had a very special wish, but none of the adults understood what he wanted," Karon said. "we went in and he said he wanted to be slimed and it had to be in Florida. Then he told us to figure it out."
It turns out that "Figure It Out" is a children's show on Nikelodeon. A special child comes out and a panel of kids have to guess what their special accomplishment is through yes or no questions. A secret movement is selected beforehand, like touching your chin. If one of the panelists does this, green slime pours down on them.
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Kevin shows off his drawings. Photo by Jennifer Sweeney |
"Kevin wants to slime everybody - his grandmother, his brother, even his toys," Karon said. "He's as excited as can be!"
Due to the immediacy of Kevin's condition, he, Brian, their grandmother and aunt are heading to Nickelodeon Studios in Florida on March 25. In addition to a day filming the TV show, Kevin will spend time at Sea World, Disney World and Epcot Center, courtesy of Make-A-Wish.
Last June Kevin was a normal first grader. He was reading at an advanced grade level and loved riding bikes with Brian.
But on the last day of school Kevin suffered several violent bouts of vomiting and severe headaches. An MRI revealed that severe ALD had onset and Kevin probably had only a few years to live.
The disease is characterized by very long chain fatty acids (VLCFA), which destroy the white myelin tissue that surrounds nerve endings in the brain . Once this process starts the nerves are unable to send the proper signals to the body. Simultaneously the adrenal glands, which control hormonal function, begin to fail, potentially causing vascular collapse.
The degeneration of the nervous system is so severe that eventually the patient suffers learning disabilities, loss of coordination, sight and the ability to walk. Over time this fatal disease leaves the patient bedridden.
"Eventually he won't be able to swallow and we've decided not to tube feed him," his grandmother Shirley Young said. "Kevin can't go back to the way he was before and to keep him alive to lay on a bed...we just don't feel that's fair to him."
"He says he knows he's going to see Jesus before Grandma, Grandpa and Brian," Young said, but she doesn't think he fully understands the concept of death. "He doesn't know any better,"she said. "He's mostly in a euphoric state where he's very comfortable."
Within the last eight months, Kevin's disease has progressed to the point that he is incontinent, restricted to a wheel chair 90% of the time and can't read or write. Kevin now rides a specially made pedal car alongside his big brother's two wheeler.
"He's very determined. He walks as often as possible," Young said. Young has custody of the children and no longer works and instead has made taking care of Kevin her full-time job. "Sometimes he makes me real tired," she said.
His brain has degenerated to the point that his 7-year-old body houses a 3-year-old brain. Kevin's link to society is the 4-year-old down the street. "He thinks he's older than me," Kevin said.
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Brian's time with Kevin, left, is special to him. Photo by Jennifer Sweeney |
His grandmother says he's terrified that he'll get sick, but Brian argues that he's not going to get ALD until he's older and stronger. Young is not sure if Brian realizes the finality of his brother's condition and that someday the same could happen to him.
Fortunately, right now Brian hasn't exhibited ALD symptoms. He is asymptomatic with a normal MRI. However, he has Addison's disease, a symptom of adrenal failure, usually a precursor for ALD, that is treated with steroids.
In the meantime Brian says he's doing what kids his age are supposed to -- watching TV, riding bikes and listening to favorites like Jewel and the Wallflowers on his CD player.
posted 3/5/98 Nevada Outpost