The story of Jeni Dwyer
I got to hold my sister Crystal moments after she was born. She was a treasure to me, having made me a big sister. While I didn’t understand fully what was happening in the coming days, weeks, months and years, I knew something was very wrong. There were lots of doctors, lots of tears and lots of questions. The doctors said she would never walk or talk. She wouldn’t survive past 12 years old. It was unbelievably hard not having hope to hold on to. We mourned the loss of a life we had hoped that she would have.
Crystal finally received a diagnosis after 5 years. While there wasn’t much in the way of resources available, it at least brought a little hope and understanding. We learned that Crystal had Tuberous Sclerosis (TSC). She has a wide range of symptoms that include cognitive disabilities, behavior problems, skin abnormalities, kidney problems, and brain tumors.
My mom armed herself with everything she possibly could and advocated for Crystal in every possible way. Crystal proved those doctors wrong. She lived past 12 years old. In fact, she turned 40 last month. She lives a full life filled with love, laughter and a curious spirit. While there isn’t a cure for Tuberous Sclerosis, there have been great advances in knowledge and resources in these last 35 years, that have made us feel less isolated, and brought us hope. Knowledge, community and connection are so powerful.