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
Nicholas was born 10 weeks premature at the Ohio State University Medical Center. As a premie, he spent 49 days in the NICU there. Over the first few months of his life, he struggled to make developmental milestones, but we were assured that he would likely meet those milestones closer to when he would have met them as a full term baby. At 9 months old, we were sent to Nationwide Children’s Hospital in Columbus, Ohio for an MRI to make sure that there was nothing else causing the issues with his development. That MRI revealed a condition called PVL, which is caused due to the white matter in his brain not fully forming before birth. We were told that 60% of kids with PVL will have some form of Cerebral Palsy, and to continue on the path we were on for treatment, which was a combination of physical and occupational therapies. At 2, we went back to Nationwide to meet with a Physical Medicine specialist, who diagnosed Nicholas with Spastic Diplegia Cerebral Palsy. We continued with PT and OT and we added Botox injections to the treatment plan to help with the spasticity in his legs. Throughout Nick’s life, he has had episodes of intense shaking that were attributed to being severe muscles spasms from the CP. They lasted only 15-20 seconds, and were not a cause for concern then. However, in July of 2019, Nick underwent a Selective Dorsal Rhizotomy at Nationwide. This is a surgery on his spine to permanently eliminate the spasticity in his legs, and end the need for Botox injections. This surgery required a stay of 3 weeks in the hospital, and because we were there so long, they were able to witness some of these episodes. They were not formally diagnosed at that time and were still being treated as a part of his CP. Then, in June of 2021, we found him unconscious in his bedroom. We went to the hospital in an ambulance, where it was determined that he had had a seizure. We were referred to Nationwide again to see a neurology specialist. We had our first EEG there and finally had a diagnosis of Epileptic seizures in CP. From there we added anti-seizure meds to his routine and regular visits to neurology for follow up. He has been having these seizures throughout, and is now being scheduled for an extended EEG to try to get to the bottom of the seizures and hopefully put an end to them.
Throughout all of his difficulties, Nicholas maintains a positive attitude. He is a typical teenage boy, who loves hockey, his friends, the Ohio State Buckeyes, and his loyal German Shepherd, Remi. He plays Miracle A League Baseball in Wheeling, WV and is a faithful follower of the middle school hockey team that his best friends play on. Nick is an inspiration to many people, to “just keep going” whenever life throws you curve balls. I’d like to get Nick a Nilly Noggin to help make his upcoming hospital stay just a little bit brighter.