Hey you all. So today, One of the closest people to my family in the rare community passed away. He was my age, only about 13 years old. He had a rare mutation in his genetic code, meaning that because of that small mistake in his genes, he couldn’t walk or talk to anyone. His name was Bertrand. I’ll only be revealing that part of his name, because, while how cruel it is, I know that people might start digging. About his health, my own, my family’s. I’m not afraid of it, my health. My diseases. Not at all, because I know how much better off I am than him. Even though I have a bunch of things wrong with my health, I can walk. I can talk. I can make art here. I can /share/ art here, with you. I am so grateful for that. This person. He was just a kid, born with a mutation that he had no say in. The doctors said he would only live until 2 years old. He lived until 13. His mother is my mom’s best friend. She and her husband dedicated their lives to finding ways to save him and all of the other kids affected by this disorder, along with kids who have other rare diseases. My own mom’s mission was the same. For my siblings and I. Bertrand will not be forgotten. He will still change the world of medicine for generations after today. He changed the world, you guys. His disorder is /still/ changing the world. And I had the privilege to know him. To be part of his journey. I’m crying right now as I write this. He deserved so much better. But because of it, he touched our hearts and our lives in ways no one could have ever imagined. Fly high, my friend. We love you. <3
Please don’t ask about my health. Only if you’re close to me you are welcome to.
