Brain Surgery for Baby Emmett
Donation protected
Meet my wonderful nephew Emmett!!
He is a beautiful, bright, funny boy who just turned two on March 12, 2015.
For his birthday, his parents received devastating news: Emmett needs brain surgery to avoid paralysis.
Our sweet Emmett started having seizure like activity at a very young age. He has been hospitalized numerous times, beginning an adventure of finding a needle in a haystack; my sister never gave up fighting for little man, demanding that doctors try harder to figure out what it was that was slowly stealing the light from her jovial son.
At 6 months he failed his hearing test. He received an EEG at 7 months, and finally at 8 months old, he was given an MRI that determined he had Hydrocephalus and a Chiari Malformation. The Hydrocephalus (swelling and fluid in the brain) had left no room for his brain; unfortunately, this caused the cerebellum to push down 8 mm into his spinal column, blocking the spinal cord from having proper spinal fluid flow.
While this diagnosis alone was heart breaking, it was only the beginning to figure out what was going on with little Emmett.
The doctors still didn’t have any answers for how to help.
Emmett was falling more and more behind in his milestones; even with various therapies (occupational and physical), he didn’t start walking until 22 months and his verbal language is significantly delayed. He wakes up screaming almost every night in excruciating pain, nearly inconsolable.
After a year and a half of continual pleading with their neurosurgeon to help them understand what they could do to help, his parents finally got an in depth MRI that included his brain and spine.
The news was devastating.
Emmett’s spinal cord is littered with cysts called Spinal Syrinx. These are blocking proper fluid flow from the brain down the spinal cord and causing damage. The largest of these six is causing the spinal cord to expand due to being so large. Without treatment, these would lead to paralysis or worse.
The prognosis is so severe, action must be taken immediately.
When the spinal syrinx is caused by Chiari malformation, the doctor recommends surgery that involves enlarging the opening at the base of your skull (sub occipital craniectomy) and expanding the covering of your brain (dura matter). If the surgery goes well, it can reduce pressure on Emmett’s brain and spinal cord, restoring the normal flow of cerebrospinal fluid, and will resolve spinal syrinx.
Emmett’s parents were able to get in contact specialist in New York that specializes in Chiari Malformation with children. This is the first time they have found a doctor who understands what Emmett is up against. Within receiving Emmett’s medical records, a plan was made almost immediately to have Emmett brought in for surgery to avoid any further damage. They have complete confidence in the team of doctors they have found, and have begun preparing for this time they will need to be in New York
This is going to be an up hill battle.
The family feels incredibly blessed to have finally found the answers to their search that seemed to end with a dead end time and time again. Of course, they are willing to do what it takes to help their son, and restore his quality of life. Now, it’s time to get to work! The specialist is not covered under their insurance. They are actively trying to appeal their insurance decision but will have to cover travel, lodging, and childcare expenses for the procedure (pre op, operation, post op, etc.).
It takes a village!
We are so close to victory for this little fighter. Please consider donating to our man, Emmett!
He is a beautiful, bright, funny boy who just turned two on March 12, 2015.
For his birthday, his parents received devastating news: Emmett needs brain surgery to avoid paralysis.
Our sweet Emmett started having seizure like activity at a very young age. He has been hospitalized numerous times, beginning an adventure of finding a needle in a haystack; my sister never gave up fighting for little man, demanding that doctors try harder to figure out what it was that was slowly stealing the light from her jovial son.
At 6 months he failed his hearing test. He received an EEG at 7 months, and finally at 8 months old, he was given an MRI that determined he had Hydrocephalus and a Chiari Malformation. The Hydrocephalus (swelling and fluid in the brain) had left no room for his brain; unfortunately, this caused the cerebellum to push down 8 mm into his spinal column, blocking the spinal cord from having proper spinal fluid flow.
While this diagnosis alone was heart breaking, it was only the beginning to figure out what was going on with little Emmett.
The doctors still didn’t have any answers for how to help.
Emmett was falling more and more behind in his milestones; even with various therapies (occupational and physical), he didn’t start walking until 22 months and his verbal language is significantly delayed. He wakes up screaming almost every night in excruciating pain, nearly inconsolable.
After a year and a half of continual pleading with their neurosurgeon to help them understand what they could do to help, his parents finally got an in depth MRI that included his brain and spine.
The news was devastating.
Emmett’s spinal cord is littered with cysts called Spinal Syrinx. These are blocking proper fluid flow from the brain down the spinal cord and causing damage. The largest of these six is causing the spinal cord to expand due to being so large. Without treatment, these would lead to paralysis or worse.
The prognosis is so severe, action must be taken immediately.
When the spinal syrinx is caused by Chiari malformation, the doctor recommends surgery that involves enlarging the opening at the base of your skull (sub occipital craniectomy) and expanding the covering of your brain (dura matter). If the surgery goes well, it can reduce pressure on Emmett’s brain and spinal cord, restoring the normal flow of cerebrospinal fluid, and will resolve spinal syrinx.
Emmett’s parents were able to get in contact specialist in New York that specializes in Chiari Malformation with children. This is the first time they have found a doctor who understands what Emmett is up against. Within receiving Emmett’s medical records, a plan was made almost immediately to have Emmett brought in for surgery to avoid any further damage. They have complete confidence in the team of doctors they have found, and have begun preparing for this time they will need to be in New York
This is going to be an up hill battle.
The family feels incredibly blessed to have finally found the answers to their search that seemed to end with a dead end time and time again. Of course, they are willing to do what it takes to help their son, and restore his quality of life. Now, it’s time to get to work! The specialist is not covered under their insurance. They are actively trying to appeal their insurance decision but will have to cover travel, lodging, and childcare expenses for the procedure (pre op, operation, post op, etc.).
It takes a village!
We are so close to victory for this little fighter. Please consider donating to our man, Emmett!
Organizer and beneficiary
Taylor Pierce
Organizer
Carthage, NC
Elizabeth Strong
Beneficiary