Support for Jackson's Brain Surgery
Donation protected
THE SURGERY
After having his first focal seizure at only seven weeks old, Jackson Moore was diagnosed Tuberous Sclerosis Complex and epilepsy. TSC is a systemic or multi-organ genetic disorder that causes non-cancerous tumors to form in various organs, most commonly in the brain, eyes, heart, kidneys, skin, and lungs but is prone to affect other organs as well. It’s also the leading genetic cause of both epilepsy and autism. There is no cure. Jackson has endured more in his short 16 months than most people have endured in their life. Despite all of the challenges he faces, he always has a smile on his face and never gives up.
The Moore family will be going to Texas Children's Hospital in Houston, Texas (16 hours from their home in Charlotte, North Carolina) from Nov. 20-Dec. 31 (or possibly longer) for Jackson's brain surgeries. They will be spending both Thanksgiving and Christmas in Houston this year as their son undergoes major brain surgeries. Please help them with funding for medical costs, travel costs, and loss of wages for Kristen while not working during this time.
We also ask for your continued prayers for sweet Jackson, for the Moore family, for their extended family, and for his team of doctors, nurses, and healthcare staff that will be operating on and supporting Jackson.
THE BACKSTORY
Douglas and Kristen Moore found out they were pregnant with their first child in the fall of 2018 with a due date of summer 2019. The pregnancy was normal, and Jackson was born two weeks early on June 19. He was perfect. The first seven weeks of his life were sweet bliss for the new family of three. Besides two unusual but small birthmarks and what appeared to be reflux, Jackson seemed to be healthy and thriving. Everything changed on August 8 when Jackson started to do a weird movement before a bath that night. His left arm shook and he made a weird face. It only lasted about 10 seconds, but mom and dad remember thinking it was weird. Later in the middle of the night, Jackson woke up around 4 a.m. and did a longer and more apparent shaking of his left arm and head. Mom immediately took a video of it so she could ask her best friend who was a nurse what she thought it was and so she could send it to her pediatrician. The next morning, Jackson did it two more times, and again mom took videos of it. By around 10 a.m. after hearing back from her friend Jennifer and the pediatrician's office, they decided to go to the ER after being advised that it may be a seizure.
August 9 they were admitted to Novant Health Hemby Children's Hospital, where Jackson was born just seven weeks prior. The pediatric neurologist on that day happened to be near the ER and came to their room immediately to view the videos. Jackson also had another episode in the ER room. The neurologist told them it didn't look good, and he needed to be admitted for testing. He was moved upstairs to a room and attached to the EEG machine for the first time. He had another seizure on the EEG machine. Then they took him down to do a brain MRI. Mom and dad were told they wouldn't get results until the next morning. It was a sleepless night, to say the least. Then on the morning of Saturday, August 10, the neurologist came in to let the family know what the results showed. August 10 will always be known as their D-Day (diagnosis day) when all of their lives changed forever. The seizures and findings from the MRI showed that Jackson likely had a rare genetic disorder called Tuberous Sclerosis Complex (TSC) as well as epilepsy. No one in the family had ever heard of this disorder. Mom and dad were shocked and grief-ridden, but they had hope. They had an answer, so couldn't the doctors just give them the medication or treatment they needed to fix it and go home? They wish it was that simple.
Jackson's journey with TSC began when benign tumors (or tubers) were found in his brain causing the onset of seizures. A tumor was also found on the back of his left eye, skin lesions called cephalic fibrous plaque have developed on his face/neck and he has ash leaf spots all over his body (the birthmarks found when he was born are also caused by TSC), he faces challenges with the enamel on his teeth and is prone to discoloration and dental pits, and he has cysts on his kidneys and spleen. He has also been diagnosed with epilepsy and global development delay. Jackson's genetic testing showed that he has TSC2, a spontaneous mutation in Chromosome 16 that causes a malfunction in the gene that provides instructions for producing a protein called tuberin, which stops the overgrowth of cells or suppresses the development of tumors. Mom and dad were also tested in case they had passed the gene mutation onto Jackson, but they both came back negative. While there is a 50% chance of passing this on, more than two-thirds of all TSC cases are spontaneous mutations.
Since Jackson was born, he has endured numerous ER visits and hospitalizations, 15 EEGs, multiple MRIs, and other tests like CT scans, PET scans, and dozens of specialist visits. He takes several strong anti-seizure medications that have helped with his seizures for brief periods of time, but they always come back. He does weekly physical therapy, occupational therapy, and speech therapy but has still been diagnosed with global development delay and is evaluated as more like a 6 to 9-month-old than a 16 almost 17 month old. The family was at a point this summer, where it was time to discuss brain surgery to remove the tubers (tumors) that are causing Jackson's seizures. Mom and dad pursued Dr. Howard Weiner and Dr. Daniel Curry at Texas Children's Hospital, known as the leading pediatric neurosurgeons for TSC patients. They brought Jackson to Houston for 2.5 weeks in September and October for presurgical evaluation to determine if he was a candidate. The tests revealed that he has three active tumors possibly causing seizures, and he is, in fact, a candidate for surgery.
This is not a simple surgery, and it is not a fix for Jackson. It is not done in one day, rather he will be connected to a Stereo EEG for up to two weeks, which is an EEG with electrodes implanted directly on the brain (this is a surgery in itself), and then once they collect more precise data about his seizures, they will determine if he needs a laser surgery to deaden the tumor, a resection surgery via a craniotomy to remove the tumor tissue, or both. This may be multiple surgeries in multiple locations on the brain, but the family will not know until they are there and hooked up to the Stereo EEG. The goal of the surgery is to reduce (or hopefully stop) seizures and to help his development progress. It is not a cure for TSC, and there is a possibility of seizures starting back again from other tumors in his brain. But there is hope that this surgery can majorly change the trajectory of Jackson's development and life.
In addition to the cost of the surgery, the Moore family has already spent a few thousand dollars on their first trip to Houston for presurgical evaluation. They will also have three post-op visits back to Houston after the surgery at one month, three months, and six months. Any amount will help!
If you would like to follow along on Jackson's journey, you can join his private group on Facebook: http://www.facebook.com/groups/jacksonbryantmoore.
View a video of Jackson's first year here: https://www.facebook.com/kim.burnette1/posts/10158643345539255
You can learn more about TSC at http://www.tsalliance.org.
Learn more about the surgery here:
https://youtu.be/RVgR8eUCgnw
https://youtu.be/qYHbyajzcXw
Thank you for your continued love and support for our family and our warrior Jackson!
After having his first focal seizure at only seven weeks old, Jackson Moore was diagnosed Tuberous Sclerosis Complex and epilepsy. TSC is a systemic or multi-organ genetic disorder that causes non-cancerous tumors to form in various organs, most commonly in the brain, eyes, heart, kidneys, skin, and lungs but is prone to affect other organs as well. It’s also the leading genetic cause of both epilepsy and autism. There is no cure. Jackson has endured more in his short 16 months than most people have endured in their life. Despite all of the challenges he faces, he always has a smile on his face and never gives up.
The Moore family will be going to Texas Children's Hospital in Houston, Texas (16 hours from their home in Charlotte, North Carolina) from Nov. 20-Dec. 31 (or possibly longer) for Jackson's brain surgeries. They will be spending both Thanksgiving and Christmas in Houston this year as their son undergoes major brain surgeries. Please help them with funding for medical costs, travel costs, and loss of wages for Kristen while not working during this time.
We also ask for your continued prayers for sweet Jackson, for the Moore family, for their extended family, and for his team of doctors, nurses, and healthcare staff that will be operating on and supporting Jackson.
THE BACKSTORY
Douglas and Kristen Moore found out they were pregnant with their first child in the fall of 2018 with a due date of summer 2019. The pregnancy was normal, and Jackson was born two weeks early on June 19. He was perfect. The first seven weeks of his life were sweet bliss for the new family of three. Besides two unusual but small birthmarks and what appeared to be reflux, Jackson seemed to be healthy and thriving. Everything changed on August 8 when Jackson started to do a weird movement before a bath that night. His left arm shook and he made a weird face. It only lasted about 10 seconds, but mom and dad remember thinking it was weird. Later in the middle of the night, Jackson woke up around 4 a.m. and did a longer and more apparent shaking of his left arm and head. Mom immediately took a video of it so she could ask her best friend who was a nurse what she thought it was and so she could send it to her pediatrician. The next morning, Jackson did it two more times, and again mom took videos of it. By around 10 a.m. after hearing back from her friend Jennifer and the pediatrician's office, they decided to go to the ER after being advised that it may be a seizure.
August 9 they were admitted to Novant Health Hemby Children's Hospital, where Jackson was born just seven weeks prior. The pediatric neurologist on that day happened to be near the ER and came to their room immediately to view the videos. Jackson also had another episode in the ER room. The neurologist told them it didn't look good, and he needed to be admitted for testing. He was moved upstairs to a room and attached to the EEG machine for the first time. He had another seizure on the EEG machine. Then they took him down to do a brain MRI. Mom and dad were told they wouldn't get results until the next morning. It was a sleepless night, to say the least. Then on the morning of Saturday, August 10, the neurologist came in to let the family know what the results showed. August 10 will always be known as their D-Day (diagnosis day) when all of their lives changed forever. The seizures and findings from the MRI showed that Jackson likely had a rare genetic disorder called Tuberous Sclerosis Complex (TSC) as well as epilepsy. No one in the family had ever heard of this disorder. Mom and dad were shocked and grief-ridden, but they had hope. They had an answer, so couldn't the doctors just give them the medication or treatment they needed to fix it and go home? They wish it was that simple.
Jackson's journey with TSC began when benign tumors (or tubers) were found in his brain causing the onset of seizures. A tumor was also found on the back of his left eye, skin lesions called cephalic fibrous plaque have developed on his face/neck and he has ash leaf spots all over his body (the birthmarks found when he was born are also caused by TSC), he faces challenges with the enamel on his teeth and is prone to discoloration and dental pits, and he has cysts on his kidneys and spleen. He has also been diagnosed with epilepsy and global development delay. Jackson's genetic testing showed that he has TSC2, a spontaneous mutation in Chromosome 16 that causes a malfunction in the gene that provides instructions for producing a protein called tuberin, which stops the overgrowth of cells or suppresses the development of tumors. Mom and dad were also tested in case they had passed the gene mutation onto Jackson, but they both came back negative. While there is a 50% chance of passing this on, more than two-thirds of all TSC cases are spontaneous mutations.
Since Jackson was born, he has endured numerous ER visits and hospitalizations, 15 EEGs, multiple MRIs, and other tests like CT scans, PET scans, and dozens of specialist visits. He takes several strong anti-seizure medications that have helped with his seizures for brief periods of time, but they always come back. He does weekly physical therapy, occupational therapy, and speech therapy but has still been diagnosed with global development delay and is evaluated as more like a 6 to 9-month-old than a 16 almost 17 month old. The family was at a point this summer, where it was time to discuss brain surgery to remove the tubers (tumors) that are causing Jackson's seizures. Mom and dad pursued Dr. Howard Weiner and Dr. Daniel Curry at Texas Children's Hospital, known as the leading pediatric neurosurgeons for TSC patients. They brought Jackson to Houston for 2.5 weeks in September and October for presurgical evaluation to determine if he was a candidate. The tests revealed that he has three active tumors possibly causing seizures, and he is, in fact, a candidate for surgery.
This is not a simple surgery, and it is not a fix for Jackson. It is not done in one day, rather he will be connected to a Stereo EEG for up to two weeks, which is an EEG with electrodes implanted directly on the brain (this is a surgery in itself), and then once they collect more precise data about his seizures, they will determine if he needs a laser surgery to deaden the tumor, a resection surgery via a craniotomy to remove the tumor tissue, or both. This may be multiple surgeries in multiple locations on the brain, but the family will not know until they are there and hooked up to the Stereo EEG. The goal of the surgery is to reduce (or hopefully stop) seizures and to help his development progress. It is not a cure for TSC, and there is a possibility of seizures starting back again from other tumors in his brain. But there is hope that this surgery can majorly change the trajectory of Jackson's development and life.
In addition to the cost of the surgery, the Moore family has already spent a few thousand dollars on their first trip to Houston for presurgical evaluation. They will also have three post-op visits back to Houston after the surgery at one month, three months, and six months. Any amount will help!
If you would like to follow along on Jackson's journey, you can join his private group on Facebook: http://www.facebook.com/groups/jacksonbryantmoore.
View a video of Jackson's first year here: https://www.facebook.com/kim.burnette1/posts/10158643345539255
You can learn more about TSC at http://www.tsalliance.org.
Learn more about the surgery here:
https://youtu.be/RVgR8eUCgnw
https://youtu.be/qYHbyajzcXw
Thank you for your continued love and support for our family and our warrior Jackson!
Fundraising team (4)
Kimberly Robinson Burnette
Organizer
Charlotte, NC
Kristen Robinson Moore
Beneficiary
Douglas Moore
Team member
Rhonda Moore
Team member