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!

Back My Campaign!

This is My Story

Cassian was born with congenital heart disease, congestive heart failure and complex heart defects that were repaired with open heart surgery at 6 days old. Unfortunately he had some major complications following his heart surgery. Cassian spent a total of almost 4 months with a breathing tube and on ventilator support. When he was almost 3 months old Cassian started having seizures. We discovered he had hydrocephalus and he was also diagnosed with epilepsy. He ended up having brain surgery to place a VP shunt and started on medications to control his seizures. He was also diagnosed with pulmonary hypertension, diastolic dysfunction and feeding/motility issues. He ended up having several other surgeries and procedures, including a gtube placement and attempted tracheostomy. He was later able to come off ventilator support and come home at a little over 5 months old. After his initial discharge, Cassian has been admitted many, many times due to ongoing chronic health conditions. He’s had several medical procedures, EEGs, EKGs, numerous other testing and undergone surgeries frequently. Cassian also has hypotonia, is developmentally delayed, and was born with vision problems that required bilateral eye surgeries. When he was 1, we discovered through genetic testing that he has a rare genetic syndrome, called Kabuki Syndrome, that is associated with his health conditions and defects. Despite everything he’s been through and continues to go through, Cassian is a happy and energetic baby with a personality and smile that melts our hearts. He is constantly overcoming obstacles and brings more joy to our lives than we ever though possible.