Logan was born in July, 2014. He is a very happy child who is always smiling and interacting with everyone he meets. In December, 2014, when he was 5 months old, we were getting ready for my cousins wedding. I picked him up to change his diaper and realized his entire body was limp and one side of his body was jerking. I had never seen a seizure before so my first thought was that he was paralyzed because he could only move one side of his body. I remember running through the hotel with him in just a diaper yelling for someone to call 911. 20 minutes later as they were loading him onto the stretcher, his seizure appeared to stop. We were rushed to the nearest pediatric hospital. After running several tests including a spinal tap, cat scan and chest x-rays, we were assured that it was probably not a big deal, just a febrile seizure that was not likely to occur again.
5 months later I was holding him with his feet in the pool. My sister noticed that his lips had turned blue and by the time I ran inside with him, he was having a tonic clonic seizure. This seizure lasted over 45 minutes and he was admitted afterwards for a 3 day inpatient stay. After this seizure, they ran an EEG that came back with some abnormal activity and he was diagnosed with epilepsy and given a prescription for a low dose of Keppra.
Logan continued to have seizures every 4-5 months. In February, 2016 he had a seizure that lasted almost an hour and he had to be intubated due to his low O2 levels. The hospital had ordered an epilepsy panel when we were inpatient and 6 weeks later, it was confirmed that Logan had an SCN1A mutation and Dravet syndrome. We were completely devastated but despite his seizures, he is doing very well cognitively. He knows his alphabet, his numbers and is bilingual.
Over the past few months, Logan’s seizures have become more frequent and still require emergency medications and hospital trips. His longest seizure has lasted over 3 hours long. It is very difficult trying to find that balance of allowing him to have fun and be a kid and keeping him from getting sick, over-exerting himself, becoming overheated, and all the other things that could trigger a seizure. We thank God for every day that he gets to live seizure free. We are so thankful for this foundation and the support groups as they have taught us so much and have been one of our main sources of support after diagnosis. DSF is our hope for a cure! Through research and the dedicated doctors and scientists that are working to help our children, we believe that someday our children will have relief from these seizures and be able to live their lives like normal kids.