stories-bryant

Bryant’s Story

Bryant Lee Weasel is a 5 year old little boy whom suffers from a rare catastrophic form of Epilepsy called Severe Myoclonic Epilepsy of Infancy. Bryant was born April 14th, 2004 via C Section due to decelerating heart tones. He weighed 8 lbs 6 oz and was 22 inches long. He was a beautiful baby boy, and was very excited to have him.

 

On the morning of August 24th, 2004 our life’s changed forever. I was giving Bryant a bath, he had been in the tub for less than 5 minutes and I was getting him out. His lips turn blue, his skin tone was pallor, and he began to jerk uncontrollably in his right arm and right leg. This episode lasted nearly 20 minutes. However, it felt like a lifetime. I called the pediatrician and he stated to bring him into the clinic. After being examined by the pediatrician Bryant was sent to the hospital as a direct admit. After many tests, everything all came back normal we were discharge home. The pediatric neurologist told us that seizures were very common and that it was possible that it would never happen again.

 

Two weeks later, Bryant experienced another seizure. This time it was associated with a fever. The seizure was grand mal in nature and lasted nearly 25 minutes. We took him to the ER. The ER doctor called the children’s hospital in St Louis and Bryant was started on Phenobarbital.

 

Bryant continued to have seizures. They were getting longer in nature and becoming more violent. I was spending countless hours on the internet trying to figure out was wrong with my son. The only diagnosis Bryant had at this time was Intractable Epilepsy. We met Dr Laux for the first time when Bryant was 27 months old. She had already read his history, and then she took a more detailed his from me. We were in her office for less than 45 minutes and she said I am 99% sure, that your son has Dravet Syndrome. I was never so relieved in all my life. We had seen 5 neurologist’s in 4 different states and after 27 months she finally figured it out. Dr Laux is a true hero. She is dedicated to her career, and she spends countless hours helping children. She has taken an interest in Dravet Syndrome and participates in research studies to help us find a cure to stop this horrific syndrome.

 

Today, Bryant still struggles with his development. He is delayed globally in all areas of development. Dr. Laux has made a huge impact on his seizure control, and we are only experiencing seizures monthly now. They are usually short in duration and stop on their own without using diastat. I can’t help to think that if we had found her sooner his quality of life would be much greater. Our journey was very challenging but we did find light at the end of the tunnel. Bryant now goes to a mainstream kindergarten ½ day 5 days a week. He has a seizure alert dog named Theo, and a big sister Chantele who is 15 years old. We continue to battle this syndrome, but our very hopeful of a cure.