His battle with cancer lasted a short 13 months. Before he passed, he gave me the gift of knowledge. He told my family that he was positive for a genetic mutation that has a 50/50 chance of passing to his children. After 14 long years of trying to obtain his medical records, my younger brother and I were both tested.
Just as the data shows, 50 percent of his offspring tested positive for the gene…me. I was diagnosed with Li-Fraumeni Syndrome 5 months ago, at age 20. We now can estimate that Li-Fraumeni Syndrome is the reason my father passed so young, of a cancer that most men get in their 50’s. This uncommon condition dramatically raises a person’s lifetime risk of developing numerous different types of cancer. This condition is highly concerning for children and young adults.
I will spend the rest of my life undergoing various scanning’s multiple times a year. It will include annual colonoscopies, endoscopies, dermatological exams, clinical breast exams, and MRIs of my entire body and brain as part of preventative care. Most people don’t need these screenings until they are well into middle age. I am only 20. I also have to decide at my young age if I ever want children. If so, I have to freeze my eggs in the hopes that one day I can have IVF. In the next couple of years I plan to have a prophylactic mastectomy and potential reconstruction. This is where I humbly ask for your help. Most insurance companies are declining reconstructive surgery as it is deemed cosmetic. Believe me, there is nothing cosmetic about this. I would much rather live with my beautiful God given breasts than have to remove them because of a 90% chance of getting cancer by the age of 40.
I am currently working on my BA in Law at the University of Arizona Online. I have just received my paralegal certificate and associate’s degree. Even though I’m not 100% sold on my future career, my goal is to be someone who can help the world become a better place, even by a little.
Thank you in advance for your support and prayers.
Nohealani Olivia
