Post by tscadvocate on Oct 29, 2015 11:48:35 GMT -5
Good morning! I wanted to reach out to you to get the word out about my sister's family.
She married her best friend in 2009. His name is Chris. In December 2007, he was involved in an accident which sent him to the emergency room. A CT of his brain revealed a mass. An MRI was conducted and showed he had a SEGA tumor that the flow of spinal fluid to his brain. On January 6, 2008, Chris underwent surgery to have the tumor removed. Just 5 days later, he was back in the operating room to have a shunt put in his head to regulate the flow of his spinal fluid.
On August 28, 2015, Chris & Ashley`s oldest son "Gage" (21 months old) began to have seizures. After several frantic episodes to get him to some place for an explanation, he was admitted to Jeff Gordon’s at Northeast Medical where he was tested and found to have the tumors in his brain the same as his Dad. Gage” was diagnosed with Tuberous Sclerosis.
Tuberous Sclerosis is a rare genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin, and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability, and autism.
There is no cure for this disorder. People with TSC should be monitored throughout their life by their physician for potential complications. Thanks to research findings and improved medical therapies, people with tuberous sclerosis complex are experiencing better health care than ever before. But more research is needed until a cure is found.
After hearing the diagnoses, doctors suggested that Chris be tested since TSC is a genetic disorder and with Chris’s history of having a brain tumor. Chris was later diagnosed with the same disorder and found to have lesions on his kidneys.
They were blessed with another son, Emerson, on January 27, 2015. He was born on his mom's birthday! He is showing physical signs of TSC. The doctors want to wait until he is a year old before they do an MRI on him to confirm their suspicions.
We will be having a BBQ fundraiser on November 14, 2015 to raise money for them. It will be held at Halligan's Ale House in Midland, NC. We are starting at 3pm and will continue until the food runs out. We have a local band coming to play from 7pm - 12am. There will also be a silent auction that day. We have bracelets made up to sell to raise money and are working getting T-Shirts printed.
Thank you for your time and may God bless you!
Maegan Cox
She married her best friend in 2009. His name is Chris. In December 2007, he was involved in an accident which sent him to the emergency room. A CT of his brain revealed a mass. An MRI was conducted and showed he had a SEGA tumor that the flow of spinal fluid to his brain. On January 6, 2008, Chris underwent surgery to have the tumor removed. Just 5 days later, he was back in the operating room to have a shunt put in his head to regulate the flow of his spinal fluid.
On August 28, 2015, Chris & Ashley`s oldest son "Gage" (21 months old) began to have seizures. After several frantic episodes to get him to some place for an explanation, he was admitted to Jeff Gordon’s at Northeast Medical where he was tested and found to have the tumors in his brain the same as his Dad. Gage” was diagnosed with Tuberous Sclerosis.
Tuberous Sclerosis is a rare genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin, and lungs. The aspects of TSC that most strongly impact quality of life are generally associated with the brain: seizures, developmental delay, intellectual disability, and autism.
There is no cure for this disorder. People with TSC should be monitored throughout their life by their physician for potential complications. Thanks to research findings and improved medical therapies, people with tuberous sclerosis complex are experiencing better health care than ever before. But more research is needed until a cure is found.
After hearing the diagnoses, doctors suggested that Chris be tested since TSC is a genetic disorder and with Chris’s history of having a brain tumor. Chris was later diagnosed with the same disorder and found to have lesions on his kidneys.
They were blessed with another son, Emerson, on January 27, 2015. He was born on his mom's birthday! He is showing physical signs of TSC. The doctors want to wait until he is a year old before they do an MRI on him to confirm their suspicions.
We will be having a BBQ fundraiser on November 14, 2015 to raise money for them. It will be held at Halligan's Ale House in Midland, NC. We are starting at 3pm and will continue until the food runs out. We have a local band coming to play from 7pm - 12am. There will also be a silent auction that day. We have bracelets made up to sell to raise money and are working getting T-Shirts printed.
Thank you for your time and may God bless you!
Maegan Cox