Ryan Christopher McDermott

Ryan is the youngest of our 6 children,5 boys and our 1 girl. He was born perfectly healthy and looked exactly like all the others who all resemble Brad! At 9 weeks old I took him to the ER because he was having small jerking motions in his arms. The Doctors said it was a seizure likely due to having vaccinations the previous week and sent us home. At 4 months he had a big seizure where I had to call 911 and needless to say I was hysterical! He was put on a medication called Phenobarbital and sent home. That was the beginning of our journey with Dravet Syndrome(a rare and catastrophic form of Epilepsy resistant to medication. It was a long 6 years before his diagnosis from Mayo Clinic! We finally had an answer but it wasn’t a good one at all but they had a combo of meds that they would use, they didn’t work. He tried and failed about 20 medications, we did Clinical Trials and the second one in 2018 helped out a lot for the grand-mal seizures but eventually developed another kind of seizure that resembled that said seizure but they didn’t register on his EEG and they were harsh! “Non-Epileptic Myoclonic Seizures.” He had countless ambulance rides and 3 helicopter rides and so much more!