Hello friends, my name is Taylor. I am 25 years young and currently live with my parents and four sisters in Maryland. Being born into a military family is always interesting and full of many adventures, but doing so with multiple medical conditions takes those adventures to an all new level! From frequent moves to deployments and the uncertainty of what’s to come in the future, my life has been one of excitement and heartache. I wouldn’t change that for the world!

Being born at 29 weeks has brought forth many unique obstacles my family and I have had to face. Saying life has been hard is an understatement. I was born in Pisa, Italy, which is one of the coolest things if you ask me! My birth on the other hand, not so cool! After having CPR for four minutes and many other complications, I beat all the odds and pulled through. Little did we know, that was the first of many obstacles we would face.

At the age of 6 months, I was diagnosed with Cerbral Palsy. I honestly cannot tell you how many surgeries I’ve been through since that time. My family lost count after 100. With each passing surgery I thought nothing else could possibly go wrong for me, but I have learned over time that thought should NEVER enter anyone’s mind.

At the early age of 19 my bladder decided to stop working. After trying many small procedures, I underwent a urostomy surgery. The surgeon used a piece of the bowel and made a stoma where the urine would flow out into a pouch called a urostomy bag. The night before the procedure I joked about having my last meal. It was my favorite: spaghetti from Olive Garden. I’ll never forget that meal and regret referring to it as my “last meal”. Immediately upon waking up from that procedure I knew something was wrong. I felt miserable and could not keep any food or liquid down. The surgeon insisted it was due to having such a large procedure. They sent me home and over the next three months I dropped from 120 pounds down to 60 pounds. My family kept taking me to doctors who kept insisting it was just a big surgery and I was still recovering. I almost died. It was the hardest months of my life, but as my mom says, I’m super stubborn and I refused to quit.

We finally found a doctor that listened and admitted me for feeding trials, further surgeries, and finally put in a central line and I started receiving all nutrition and fluids through an IV line into my heart. Without this line, I wouldn’t be here today and I’m so thankful to have found someone that listened. I was diagnosed with chronic intestinal pseudo obstruction. Food was no longer an option. Do you know how hard that is? I never realized that as Americans, we eat to celebrate EVERYTHING!

Unfortunately, central lines come with many risks. Over the last six years I have had 8 central lines placed due to complications. My access is now limited and eventually they will not be able to find a place to put in a new line safely. I’ve also recently started fighting a bad blood infection called mycobacterium Avium Complex. This infection is life threatening and hard to rid of once it finds a home in a host.

I would love to have my “normal” life back, without being attached to an artificial feeding regime and medications to control all of the sickness and pain that come along with it.

I’ve recently learned that there is hope and that I qualify for a small and large bowel transplant. These are far from common operations and only attempted by a handful of surgeons due to the risks involved. The immune system fights to rid your body of substances that appear to be foreign, such as the bowel, and due to the fact that there are a larger number of white blood cells and bacteria within the bowel than any other organ in the body, rejection is more likely than with any other transplanted organs. The complex nature of this particular transplant – hours in surgery and then over a year to recover – makes this operation more expensive and dangerous than any other to a normal person and even more so for myself.

Despite all of the risks, it basically comes down to one thing: I can either wait until my liver starts to fail from TPN dependency and then have to have a liver AND a bowel transplant or take action now while my other organs are still doing well. To me, that decision is obvious. I must act now! My family and I are so thankful for the opportunity to finally have my life back.

We will have to temporarily move to Washington DC for approximately one year so that I will be close enough to the hospital for emergencies. The new organ will also require continuous maintenance and anti-rejection efforts. Even with insurance, we will face ongoing extreme expenses to make this work. We are thankful to have found and partnered with COTA for assistance with transplant-related expenses.

I know the road ahead is going to be a hard one, but I have a lot of fight left in me. Life is too good to just let it go. Anything you can offer is appreciated, whether it is a donation to COTA in my honor or even if all you have is your thoughts and prayers!

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.