ultimately affects the brain, nerves, liver,
spleen, bone marrow and in severe cases,
the lungs.
“It comes from the mother and the
father. It’s the only way to get it,” Rebecca
said.
“We always tell Johnathan that we’re
X Men, because we’re mutations. He likes
that.”
Johnathan has a much simpler way of
defining his disease.
“I have cholesterol in my brain and
basically what I say to people is that the
little vacuum in your brain that makes the
cholesterol, mine broke when I was little.”
The total amount raised by the yearly
event is just shy of half a million dollars,
with every dollar going directly for
research of the disease.
Having already participated in three
clinical trials Johnathan has experienced
drastic delays in the progression of the
neurological symptoms of NPC. Allowing
him a normal 12-year olds lifestyle.
Soon to be a seventh grader at
Solorsano Middle School, Johnathan is
active in school. He loves performing and
has appeared in 15 plays, and he enjoys
video games and hanging with his friends.
One of those friends, Tadan Cook,
14, and his mother Christine, consider
Johnathan, “our super hero.”
That’s a fair assessment of the young
boy, who at the age of six days old was
discovered to have an oversized spleen
and liver. The cause of these abnormalities
went unknown for three years despite
countless tests and four blood platelet
transfusions. The results revealed that
he was in complete liver failure with no
chance of survival.
Amazingly Johnathan beat the odds and
two months later was discharged from the
hospital with a d