My son Jordan passed away 3-20-2020. He was and always will be the love of my life. He was put through so much through the years, but never complained. He took the needlesticks, port sticks like the champ he was. He was the kindest, sweetest, young man ever. He was diagnosed with auto immune diseases, dematomyositis and scleroderma in 2007. He was 10 years old. He was a Duke patient and immediately had a port put in and pumped full of horrible medications including Chemo, high dose steroids, IVIG which caused life threatening aseptic meningitis and Psuedo Tumor Cerebri. He was in so much pain. I hated myself for having to be the one to give permission for the doctors to experiment on him in order to save his life. He had his first tonic clonic seizure 11-13-2018 and we were just hospitalized a month ago with his third know seizure which resulted in him falling and fracturing his cheekbone. He was diagnosed with Epilepsy. He was put on Keppra, which caused severe side effects so he was changed to another seizure medication which was no better. He wanted to go fishing with his sister and his two young nephews but they were waiting on new rods that her fiancé was bringing. He knew not to be alone around water but walked down to our pond. I never knew he had left alone and his sister was getting the boys ready. The pond is a good walk away. His sister found her brother in the pond around 20 minutes later. He had a seizure and fell into our pond. This was 10 days ago. My son was 22 years old and, again, was the love of my life. I am completely broken.
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