2020 has been a tough year for a lot of people. Its hard to imagine that for some, Covid-19 wouldn't be the main focus of this difficult year.
For those who know my brave and courageous 21 year old cousin Olivia, her story, and her lifelong battle with Cystic Fibrosis (CF), feel free to skip this paragraph and read on to the RECENT UPDATES section. If CF is new to you, you should know that CF is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. Olivia has endured daily lifelong ritual treatments including taking oral enzymes with every meal to regulate digestion, daily percussive vest sessions to help dislodge mucus in the lungs, and more. Just over a year ago she was mercy flighted by jet to Cleveland Clinic where she remained on life support for 3 weeks until she underwent emergency double lung transplant. But her story hasn't ended there. Surviving through a major organ transplant rarely comes without complications
RECENT UPDATES: October 30th marked one year since Olivia's transplant and Olivia's Mother, Sue Maniace reported that as of today, Olivia has been hospitalized 18 times since her transplant. These hospitalizations ranged from 5 to 30 days each! In early October Olivia developed PRES syndrome due to a reaction to her anti rejection meds. This landed her in the ICU after a seizure, becoming unresponsive and needing to be intubated. After the last 4 weeks back in Cleveland a PET scan and biopsy revealed the PTLD (post transplant lymphoma) was back. They found a 3 inch mass in her lower left lung and 2 small lesions, one near her pelvis and one in her lower abdomen. Most recently they received news of a clinical trial being offered. Olivia will be the first at the Cleveland Clinic to get the treatment. It is a stage 3 trial with great promise and does not have the toxicity and side effects like Chemo. It is a type of Cellular therapy. Through all of this, Olivia's Family (Sue, Dave, and Kyle) have been traveling back and forth from Batavia to Cleveland. This schedule of constant travel will continue through the trial and at least into the next year.
This fund will go towards Olivia's continued medical costs as well as the ever-growing expenses that accumulate when you are forced to spend so much of your time away from home, traveling, and in and out of hospital rooms.
Every dollar donated is appreciated more than you could ever know! Hopefully very soon Olivia will be spending more of her time at home, working selflessly to help other young people who are afflicted with similar circumstances through her organization "Liv Luv Breathe", which creates care packages with key comfort items that other hospitalized young people are often lacking when stuck in the hospital for days or weeks! Please share this everywhere with the hasthag #LivLuvBreathe and consider contributing whatever you can this Holiday Season.
Thank you for taking time out of your day to hear about my Cousin's health journey. Even If you can not donate please share with the hasthag #LivLuvBreathe. They need all the exposure they can get!
