Cashlynn Perry

Patient Leader

My name is Cashlynn Perry. I’m a mom, a wife, and an advocate. I was thrust into the medical world in 2014 when I had my incredible son, Stockton. Stockton is an undiagnosed medical miracle, with many different conditions caused by a genetic mutation we have not yet been able to figure out. His medical conditions range from physical to developmental, and everything in between. He has been “diagnosed” with Arthrogryposis, Epilepsy, Arnold Chiari Malformation, Hydrocephalus, Cerebral Palsy, Chronic Respiratory Failure, Scoliosis, Failure to Thrive, and the list goes on and on. He is Trach, shunt, and feeding tube dependant. People hear all of his medical struggles and instantly pity him, and our family. He has spent his life being labeled by what he can’t do, what he will never do, and one day I just had enough of it. I wanted the world to see that there is MORE to him. MORE than just disability. He is a little boy with the silliest personality and the best cheesy grin. He loves to dance and play with his parents and siblings. He is MORE. His life is about so much more than what he cannot do. One day it just clicked for me that we get to choose. We get to choose whether or not to buckle under the pressure and struggles of raising such a complex and fragile little boy. There is so much in our lives outside of our control, but what we do get to control is our attitudes. We get to choose what his life outside of hospitals looks like. We chose, and everyday continue to choose more. We choose hope, and strength, resilience and memories. It isn’t always easy, but because of this choice Stocktons life is more. Stockton has been put into boxes and statistics his entire life. He was never supposed to turn 1, according to the doctors, and yet we just celebrated his 5th birthday. I am passionate about advocating for more. I want to show the world that quality of life isn’t a blanket label that covers everyone. Quality of life looks different to every single person! My son HAS a quality of life, and the evidence is in every toothy smile and laugh. In raising Stockton, we have seen how the public reacts to the disabled and it has shown me how much people just need education. Disability shouldn’t make people uncomfortable, and yet it does. I want to bridge this gap and help the world to see how important inclusion is, and that every life matters.

Location

Salt Lake City, UT

Nominations

Advocating for Another Best Kept Secret

She is always trying to help others, even when going through things herself. She gives strength to others and encouraging them to keep going and get support. She has been told to give up on her son with doing any more treatment with him. She figured out a way to bring him many states away to get a doctor that would try giving it a better life.  — Jodi

Cashlynn Perry

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