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News from ABC 7 May 11, 2007
Vallejo Boy With Rare Illness
Inspires Others
See the beautifull video of Kian
Participates In Special Olympics
May 11 - KGO - A young Vallejo boy afflicted with a rare
debilitating disease is proving to be an inspiration as he struggles
with his health. At seven years old, he's already lived longer than
most people diagnosed with
Hurler's Syndrome. Today, he participated in the Special
Olympics.
Seven-year-old Kian Jordan Rose is one of more than 200 students
participating in Vallejo's 35th Annual Special Olympics. His anxious
parents hopeful his fragile body would allow him to be as normal a
child as possible.
Kevin Rose, Kian's father: "I handle him like a seven-year-old child.
I mean, the wife handles him like glass, but I continue to believe
in God and the support that the medicine is doing to him. He's going
to be okay."
But normal is not Kian's world. He is diagnosed with Hurler's
Syndrome, a genetic enzyme disorder that can affect his heart, lungs,
liver, kidney and brain. It can lead to blindness, mental
retardation and loss of the ability to walk and talk. The
debilitating illness is usually fatal. So far, Kian has defied the
odds.
Sharon Rose, Kian's mother: "Well, usually in the past it's been
that they usually pass, you know, that they die between the ages of
three and 10. Kian is -- turned seven a couple of weeks ago. So we've
got him to seven. So our next hurdle is to get him to age 10."
Kian wears a brace to help him walk. He has rods on his spine that
have to be adjusted in surgery every six months. He's scheduled to
undergo surgery again next month.
In spite of all these challenges, next year he's going into a second
grade special education class.
Larry Baracco, special education teacher: "Things are new or hard
for him, but routines are good. After we get settled he does real
well, and he's learned a lot in two years."
Kian's parents say for him to have survived this long is
extraordinary, for him to participate in this event is remarkable.
Sharon Rose: "We have called him our miracle child, and he's awesome.
He is my hero, and everyone else in our family, he's our hero, and
he continues to defy the odds. Much surpassed what we or anybody
thought that he would be able to do."
Kian doesn't appear to be too concerned about all that. He's too
busy just being a child.
Kian's parents set up a foundation to raise money for research into
Hurler's Syndrome. Their golf tournament last year raised $10,000
dollars for the UCSF Pediatric Bone Marrow Program. This year's
tournament will be held Monday, July 30th at the Castlewood Country
Club in Pleasanton. The goal is $25,000 dollars.
For more information, visit
www.kiansjourney.com .
http://abclocal.go.com/kgo/story?section=local&id=5297311
See the beautifull video of Kian
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