Pretty early on, however, it became clear that Emmett was undergoing a variety of different seizures. After many months of tests and doctor's visits, and a couple of different neurologists, the family has finally hit upon the cause of these seizures and a treatment.
Emmett's condition is called right Hemimegalencephaly (rHME) . It's a congenital, genetic disorder that causes one hemisphere of the brain to grow abnormally large. It's so rare that it only accounts for 0.2% of pediatric epilepsy. HME has caused Emmett to have intractable seizures so frequently for the last 4+ months that his development is halted at the level of a newborn (except for his vocal skills!). He can't learn if his brain is being "zapped" multiple times an hour. Ben and Annie have chosen UCLA Mattel Children's Hospital for care because the team there has experience treating this particular disorder.
The good news from pre-surgical evaluation last week is that Emmett's left hemisphere is healthy which makes him an excellent candidate for surgery. The operation must be undertaken as soon as possible to prevent the right hemisphere from "poisoning" the healthy side.
The surgery is called a functional hemispherectomy and entails completely disconnecting the bad hemisphere. The amazing part is that infant's brains are so plastic, that he has a very good chance of developing "normally" after surgery, with lots of therapy to teach his left hemisphere that it's in charge now!
Emmett, Annie and Ben are heading back to California this Sunday for surgery on July 18th!
They will have to go to L.A. a total of 3 times in 12 months. His "local" neurologist is 2 hours away in Atlanta, that's a once a month visit. He'll need therapy for years. He'll be on drugs for at least a year. They have good insurance but the co-pays and travel costs add up, and this is where we come in.
It is a great thing that Ben and Annie have health insurance at all, but as you either know or can imagine, the financial stability of a family with two artist parents is tentative at best. Please help to offset the many many ancillary costs that they will have over the years to come.
I have set the goal at $15,000, but this is only a portion of the help they will need. The great thing about this platform is that Annie and Ben will be able to withdraw funds as they need them, rather than waiting for the full amount to be matched. And, we can go over the goal!
The Campbell-Belchers are so grateful to have a supportive and loving community of family, friends, fellow ceramicists, musicians, and like-minded weirdos. Of course it makes this ordeal much easier to endure when there is a large and caring human safety net to count on. Let's be that safety net in a very real and tangible way.
- Jennifer Wyn
Organizer and beneficiary
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