COTA for Victoria

Our Story

This is Victoria. For 13 years she lived a normal “healthy” life until late October 2019 when everything changed. Victoria had complained for several days of intense belly pain, but I wasn’t too concerned, as she often had stomach pain. After several days of pain with no improvement, I took her to our local ER to be examined. I truly expected the answer to be something simple enough and that we’d be on our way. Never did I expect the life-altering change that was about to occur.
X-rays were taken and not long after the doctor came into the room with this statement: “Your films appear to be most impressive. We are awaiting consult from Riley. We will most likely be getting a CT shortly.” That was all the explanation we received until hours later the doctor returned to tell us Victoria suffered from a volvulus and she was to be transported to Riley via ambulance. Upon arrival, the surgeon examined Victoria and explained she would be repairing the twisted bowels and suspected blockage in the colon. Five hours later our baby was out of surgery. She had 8 inches of her transverse colon resected but was expected to make a full recovery. Ten days later, Victoria returned home but was not well. Within 48 hours she was readmitted and eventually had a second surgery to remove scar tissue.
In early January 2020 Victoria was admitted once again for severe distention and unexplained dilated loops of small bowel. During this hospital stay, Victoria underwent numerous tests, procedures and a third surgery to disconnect her colon and create an ileostomy in an effort to allow her bowels to rest. Her condition was a complete mystery and had many doctors baffled. After two long months, she was finally released in March with the diagnosis of Chronic Intestinal Pseudo Obstruction.
The next several months would be spent in and out of the hospital trying to manage her condition and find the right cocktail of medications to help improve her symptoms. Nothing seemed to truly work.
Finally in August, after completing a genetic sequencing test, Victoria got an answer: she was diagnosed with a genetic disorder called ACTG2 gene mutation. This specific mutation causes the muscles in the intestines to not work at all. Because of this, she suffers from chronic intestinal pseudo obstruction and can no longer eat food leaving her completely TPN dependent. Her condition is extremely rare and incredibly complex.
Recently she has had major setbacks that have now led her to begin the process of intestinal transplant. Her journey this last year has been nothing short of a battle and there is still more to come but I have Faith that Victoria will be Victorious.

Your prayers, support and donations to COTA are invaluable for this family, our journey and her fight.
#VStrong

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.