My mom, Taryn Ceurvels, had symptoms of EDS that went unnoticed until she broke her back when I was in the 4th grade. From then on she was constantly in pain until she passed in 2020. She was diagnosed when I was in the 7th grade, and those three years in between were horrible. She left countless doctor offices in tears as they gave her no explanation for the chronic pain she felt. This pain was in her neck, back, teeth, eyes, feet, shoulders, hands, and legs. Along with this chronic pain she had the softest skin and was able to do a split regardless of being seven months pregnant. When I was in the 7th grade I got a text saying she would be picking me up from school instead of me taking the bus, when I got in her car she had mascara all over her face — they were the tears of someone who fought so hard for an answer only for that answer to be that there was no fixing her. Tears of relief, pain and grief of the normal life she would never have. My mom had surgeries on both her hands twice and a back surgery which left her bed ridden for weeks. My mom was going to eventually become wheelchair bound and would need a spinal/neck fusion. With age her pain only became worse and she nearly became deficient in every vitamin needed in the body. She couldn’t go up and down stairs or brush her own hair, and the most painful thing, she couldn’t color anymore due to her hand/thumb pain. All my mom wanted was an answer, and once she got that she made it her life mission to spread awareness for the disorder that took her sense of normalcy. But no matter how much pain she was in she always had the biggest smile, and had so much love in her heart that will never be forgotten. So now that she is gone it is now my life mission to spread her story, spread awareness and tell people how strong, goofy and amazing my momma was. I will always be her voice.
(Riley Ceurvels)
