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About
Evan
Evan is a little boy born in October 2006 who was diagnosed at 8 weeks of age
with a rare brain tumor called Hypothalamic Hamartoma (HH.) Here
is a good explanation of HH.
Due to an unknown reason, HH develops in
utero early in pregnancy. It is a small mass on the hypothalamus -
basically in the center of the brain. While there are a bunch of side
effects, people don't die from this, it doesn't grow or mutate into
cancer, and once removed it never returns. The signature symptom is the gelastic seizure, which is an involuntary laughing seizure that usually lasts about 20 seconds. Some people with HH, like Evan, may also have other kinds of seizures, which are more damaging to the brain. Evan exhibited 4 types of seizures, including very dangerous ones called "infantile spasms."
In addition to seizures, there are some challenging and dangerous
behaviors that may emerge, but every kid is different (also making it hard
to diagnose.) Not much about the progression patterns and path of HH is
known since it's very rare. As for treatment, there is one hospital in the
world that specializes in treatment and surgery for this disorder, Barrow
Neurological Institute in Phoenix. BNI has performed over 110 surgeries to
remove the HH with good success rate; in many cases eliminating all
seizures and symptoms. Patients who experience this success are described
as "reborn."
Evan received this brain surgery to remove almost all of the
tumor in August 2007. He is doing very well. 95% of his seizures have been eliminated, including the most dangerous ones (only 2-3 gelastic seizures per day remain.) Thanks to the generosity of both friends and strangers we were able to pull this off financially.
However, there continue to be medical bills for follow up care. I, his
mother, have set up this website to help earn money to pay for these ongoing
expenses. Thank you for your support.
- Evan's Mom, Allison
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