Clayton and Kirah
My journey into finding that I have Lynch Syndrome (PMS2) was about the hardest you could fathom, I lost my oldest daughter, Kirah at 19 to Constitutional MisMatch Repair Deficiency (CMMRD).
Cancer did not run in my family but yet it did with Kirah’s mom. Kirah’s grandmother and great grandmother each died of ovarian cancer which metastized to their colon. Also, she lost her first cousin to CMMRD as well at the age of 8. While we knew that it was prevalent on the maternal side of the family, we did not deep dive into my family genetics because it was not common and Genetic Counseling came with ramifications with insurance. That all changed very abruptly after she was diagnosed with ovarian cancer at 18 and was worked up for colon cancer shortly after. Polyps were everywhere in my poor baby’s colon and that is when the Gastroenterologist recommended genetic counseling for both her and me. The results were that not only was her mom a carrier but I was too and it manifested in Kirah with CMMRD. Both of us brought the PMS2 mismatch to the table.
While I am still attempting to heal from the person I knew and loved the most, I now, have to be mindful of my own health with Lynch Syndrome. I have started the screening process and have spoken to Genetic Counselors and so far, I have not had any display of the cancers that present themselves. I will continue to do so because my younger daughter Mila, needs me to be here for her as long as possible and Kirah would want the same love, dedication, energy and time afforded to her.
Not only has losing her changed my life dramatically, it has inspired me to contribute in any way possible to raise awareness in both Lynch Syndrome and CMMRD. Most days, I still struggle but knowing the bond that she and I had, I channel it into energy to honor her and the beauty that she brought to this world. I am aliveandkickin today for them!
Watch Kirah's story and hear her music!