I am on the Waiting List for my NillyNoggin EEG Cap. It will help me during my EEG testing! Please help me reach my goal.
I am so excited to receive my NillyNoggin!
And an added bonus,
if I go above and beyond my goal, we will help other Warriors battling epilepsy! How?
Once I reach my goal of $50, every $50 over that will support other Warriors wishing for a NillyNoggin!
I would really like to help others battling neurological conditions. I know what its like to fight every day and having something to help us get through stressful testing with a smile and help us feel like a rockstar is priceless.
Let’s work together and help sponsor NillyNoggin EEG Caps for more warriors battling epilepsy!
Help Me Feel like a Rockstar!
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 cap will help ease my anxiety and make life easier on everyone involved with my care.
And Just a Bit More About Me
Aniya was first diagnosed with SMA (Spinal Muscular Atrophy) just seven days after she was born. We fought insurance for 5 months for a lifesaving gene infusion (the worlds most expensive drug 2.1 million dollars, called Zolgensma) that was ultimately her only HOPE to survive and have the best chance at life. We finally won that battle and she received her “new designer genes”! Aniya’s battle, and our battle as a family ultimately changed the insurance policy for all future babies who would be diagnosed with SMA, that they would automatically be approved for this lifesaving infusion through TMHP!
Then just one year after the devastating news of her first diagnosis of SMA we then faced her second diagnosis of Frontal Cortical Dysplasia. Again, our world came crashing down around us. Aniya’s battle with FCD began. All the doctor visits, the EEG’s, MRI’s, switching of medication and her still having seizures. We are still on the path of figuring out her FCD diagnosis and which medication will work best for her, if that is even possible. We will soon repeat the 72hr EEG and MRI and be referred to an epilepsy specialist to further help navigate the next steps which may result to brain surgery.
Aniya is a warrior, just as each child facing a diagnosis is. We as a family want to help spread awareness of FCD because I know it often can be overlooked as it was for Aniya in her first two years of life.
