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Help Annie, Ben, and Emmett!

$18,989 of $15,000 goal

Raised by 263 people in 13 months
Created July 13, 2017
As most of you know, Annie and Ben Campbell-Belcher welcomed Emmett to Earth on November 29th, 2016. He's a beaut, with a head full of orange hair and blue eyes - combining the best of both of their many good traits (banjo playing aside).

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.





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The CampbellvonBelchers are free!
https://www.caringbridge.org/visit/hopeinonehemisphere/journal

From Annie and Ben: Each and everyone of you have helped make this, the biggest challenge of our lives, a little less stressful. We feel gratitude to YOU every time we book last-minute plane tickets, book a hotel, or pay an insurance co-pay because we don't have to worry. Our insurance will only cover 2 physical therapy sessions a month. Emmett will need 4x that and we'll be able to provide that to him with out financial strain because of your generosity. We wish that we could personally thank each and every one of you. Just know that you have lessened our burden considerably and we feel it every day. Thank you. Thank you. Thank you.
Love, Annie Ben and Emmett.

P.S. I will continue to post about Emmett's ongoing progress via caring bridge.
P.P.S. I just discovered I CAN thank each and every one of you via Go Fund Me...but just know we wish we could hug you ALL!! Or a firm handshake...which ever you'd be more comfortable with ;)
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The latest from California (nothing but good news!):

Hi Team Emmett!
The Docs just finished rounds and all is well! It was the first time we heard the phrase "He's meeting all his milestones." in reference to our son. Not milestones in the traditional sense, but in a post-surgical sense. His body is doing the things they hope to see during the healing process. They have removed 2 unnecessary IVs (he had four!), they've stopped supplemental oxygen and IV fluids. The drain in his skull is draining at the appropriate rate and the fluid therein is getting clearer. He's taking bottles like a champ and we just had a successful hour-long nursing session! He is still spending most of the time sleeping and his eyes are too swollen to open. The swelling will sustain through tomorrow-ish then will begin to go down and he'll see a whole new world. For those of you don't know, Emmett's seizures (clinical and subclinical, i.e. visible and invisible) were so pervasive that, while his eyes worked, he could not process what he was seeing. Any of you who have met him, know that he didn't look at you or anything that babies would normally be into. His MRI looked great, too!
He's a little fussy but usually falls back asleep before he gets too upset. He's still moving all four limbs, right side way more than left. We have begun massaging and moving his left side to help the left hemisphere realize its in charge now. Though it obviously got a head start with its responsibilities when the right side gave up its duties and started freaking out. On that topic, the Doc I mentioned yesterday talked to the retired neuro-nurse and she said in her opinion, intensive in-patient therapy would not be appropriate for a baby as young as Emmett who has yet to achieve any typical milestones. So we're back with our original plan of Early Intervention PT/OT at home and outpatient, both a couple time a week. We were happy to find out that the PT our EI coordinator works with has a neurological certification, something we have come to learn is very important in treating hemi kids. Our insurance only covers 2 outpatient sessions a MONTH. So right there is a direct example of how your generous donations will be used for years! Anytime you see Emmett achieving a milestone, know that YOU played a roll in making that happen!!

Ben and I are doing better every day too. It felt GREAT to hold and nurse him. We take turns going back to the hotel to rest and we're allowed to leave at the same time so we've had some walks and meals out...then we're like "Oh! Right! We're in California!!"
Thats all for now!
Thank you again for your continued support in all forms! We love you!
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Hi everyone, two pieces of great news!

1) We hit our goal! Thank you so much to everyone who has donated and shared. We can definitely go over our goal, so no need to stop now.

and, WAY more importantly . . .

2) Emmett is out of surgery and in recovery!

This from Annie . . .

Dr. Fallah just came to find us and told us it all went perfectly! He only needed a little blood. We have not seen him yet as anesthesiology is getting him settled in his PICU room and deciding if they will take out his breathing tube or leave it in overnight just in case. He will be checked every hour for the next 24 hours for internal bleeding (rare) and hydrocephalus (20% chance). Apparently he will look normal now (other than his head wrap and lots of leads) but his swelling will increase over the next 48 hours then begin to go down. I will sleep next to him in a recliner tonight and Ben the next night. They will do an MRI tomorrow to make sure all the connections are cut but Fallah said it all looked good to him when he was in there. So! Everything looks good for now!
We love you ALL! Thank you SOOOOOOOO much!!! I didn't get nearly as anxious as I was expecting and maybe it was all the positive energy and prayers coming at us from all over the world!
More tomorrow!
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$18,989 of $15,000 goal

Raised by 263 people in 13 months
Created July 13, 2017
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