I am SO excited to receive my NillyNoggin cap!
I’m even more excited to be part of the Warrior Troop at Hannahtopia.
The Troop is made up of amazing warriors like me – kids and adults who face medical challenges every day. Hannahtopia helps us by bringing fun, color and comfort to our lives. Creating positive happy moments. Happiness is SO important – it helps with the healing process!
My medical condition requires me to get EEG tests that are very medically sterile looking and often scary.
Sometimes an EEG is worn for days, in public, and people often stare. The NillyNoggin covers up this scary medical look. It puts a positive, happy twist on the EEG procedure that some of us have to get a lot. The NillyNoggin cap is comfortable and colorful! Lots of people will come up to talk with me ’cause it’s so cool! It will also give me confidence and comfort!
This is My Story
After having his first seizure at only seven weeks old, Jackson was diagnosed with 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’s journey with TSC began when benign tubers (tumors) 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, 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. 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.
Since Jackson was born, he has endured numerous ER visits and hospitalizations, nearly 20 EEGs, multiple sedated MRIs, and other tests like CT scans, PET scans, dozens of specialist visits, and most recently in December 2020, Jackson underwent surgery to have 26 electrodes implanted in his brain for a Stereo EEG and then had laser ablation brain surgery. He takes several strong anti-seizure medications daily and 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 9-to-12-month-old than a 20 month old. At this time, he cannot stand on his own or walk, cannot feed himself and is evaluated at a 1-3 month level in speech. Jackson has endured more in his short 20 months than most people have endured in their lifetime. And even though he has had brain surgery to try to stop his daily seizures and improve development, it is not a fix for Jackson. It is not a cure for TSC, and there is a possibility of seizures starting back again from other tumors in his brain or other complications beginning that affect other organs.
TSC is a variable disease that impacts every person differently. There is no way to plan for what may happen, to know what his future holds or to know if he will be able to function independently, but the Tuberous Sclerosis Alliance tagline says, “We will give everything, but up.” There is hope and Jackson perseveres with grace and grit through it all.
|Cassie Townsend||$40||March 02, 2021|
|Mary Ann Lamb||$40||March 02, 2021|
|SUZANNE DUNNING||$40||March 01, 2021|