Nine-year-old Kai Diawne was a normal kid. The only thing he had to worry about was a rare disorder. His doctor told his parents it wouldn’t even affect him.
Kai was diagnosed with type 1 Chiari malformation when he was four.
Chiari malformation is a birth defect, which causes the lower parts of the brain to be pushed downwards towards the spinal cord. They can place pressure on the brain and can block the blow of cerebrospinal fluid (which protects and removes waste from the brain and spine) to and from the brain.
Many sufferers of type 1 Chiara malformation don’t experience any symptoms, so Kai’s parents weren’t particularly worried.
But then, Kai began to develop headaches. Then he got sleepy all the time, and began experiencing pins and needles in his arms and legs.
These are all symptoms of his Chiara malformation, ones that most don’t experience, and this his parents and doctors were afraid of.
Doctors didn’t want to operate on Kai unless the affects were severe, since he is a child and the treatment for Chiara malfunction would require extensive surgery. But eventually it became obvious that his symptoms weren’t getting any better.
“He also suffers problems with his balance,” said his mother, Michele Boardman, “but he doesn’t let it bother him. Every time he falls down he gets right back up again.”
“He got to the point where his brain couldn’t drain fluid,”
So he went into surgery. The surgery required him to get a bone in his skull removed, in order to relieve the pressure on the lower parts of his brain.
But that wasn’t the end of young Kai’s hospital stay. He then sustained medical meningitis, and had to have another eight operations to get rid of the fluid buildup in his brain.
After six weeks, he was finally permitted to go home.
“From the moment he was allowed home, all he’s talked about is being able to fundraise and help other poorly girls and boys,” his mother said. “The amount of surgery he went through must have been so tough, but he never stopped smiling.”
Now, he raises money for Sheffield Children’s Hospital, where he stayed, and plans to spend a healthy Christmas with his mom and three sisters.
