I was born with a rare disease called Tuberous Sclerosis, also known as TSC (Tuberous Sclerosis Complex). My brother, Ashley has this condition also. My parents have the recessive gene. The disease causes benign tumors in multiple body organs including brain, eyes, heart, lungs, kidneys and liver. It also brings the appearance of skin tag type lesions in various places. A lot of people say they never notice them, but if you see close you can see i do have some on my face. The appearance of such things can be eliminated with pricey laser surgery, but only to grow and return eventually.. Throughout grade school I used to be more self-contious of my appearance, but God created me beautiful. I don't need any adjustment.
I had seizures when I was a few months old because of the condition. I received shots, which eliminated them completely to this day. Since the tumors are benign they are not cancerous, but can effect the organ it sits in. My brother's tumors in the brain are in the reasoning portion, which has caused limitation to his understanding in some areas. We both have tumors in the kidneys, eyes and I have recently come to the knowledge that within the last seven years tumors have appeared in my liver. I have lived a normal life where I competed in sports, made honor roll in high school, graduated college, served a mission and have started my journey to my dream to become an amazing journalist. My brother struggled a little more than me attending special ed, not able to serve a full-time mission and not attend college, but that doesnt mean he's not amazing. He rides his bike in sprinkler boots for miles.. He can ride 50-100 miles a day. He is still the most amazing person in the world to me. He does so much for people, works hard and is the biggest sweetheart. TSC affects each person differently as you can see.
My brother's kidneys are normal size, mine are about six centimeters bigger than his and any normal kidney. He has a tumor that blood vessles are feeding on and causing high blood pressure, so he takes medication to keep that at bay. My kidneys have tumors that cause my kidneys to grow. I had a tumor the size of seven centimeters that burst when I had a wreck on my snowboard in November. As my nephrologist mentioned today that it burst in attempt to almost kill me but failed. In 2007, I had a MRI on my kidneys and since over the course of the years no change had taken affect and I was functioning normally I never returned to get an MRI until after my accident in November 2013 when I caught an edge on my snowboard, which lacerated my kidney and bruised my left lung. After a blood transfusion, oxygen, months of iron supplements and taking other vitamins I was getting back to normal or so I thought. In January, my nephrologist mentioned a pill that could shrink my tumors but cause quite the amount of side effects.. I felt scared and uncertain and not feeling that was the right decision. It was only today that after another MRI was observed that I had done in June that the pill was the answer to help me live a long happy life. The results of the MRI proved that since the last MRI in 2007 my kidneys had grown five centimeters because of the tumors and appearance of tumors in the liver for the first time were being seen. I was told my kidney function is noticeably decreasing. I know it is subtle because I feel relatively normal. My nephrologist then brought up the pill he suggested me take when I visited in January. My mom was there to help me understand and know what to do. This pill, developed five years ago, is made to decrease the size of tumors and must be taken lifelong... I was told because my kidneys are growing, the tumors are somehow growing and increasing, that my kidney function is decreasing that I should not ever let myself get pregnant........ This KILLED ME... All my life I have dreamed to have the experience of pregnancy.. to have a baby, to raise a baby that has similar features as me. I know I am to still have the chance to become a mom and have children. Because of the pressure on the body during pregnancy, kidneys go through much during pregnancy. It would be life threatening to me. Previously, regarding the pill, I was told I could stop taking it to get pregnant when I choose to and reconvene with the dose after the baby was born. One side effect to the pill is birth defects in the fetus during pregnancy, but this time after seeing how enlarged my kidneys currently are and the current activity in the liver, I was told "Do not get pregnant" at all because of the severe health risks that could result in death. "The bursting of the tumor tried to kill you and it failed," my nephrologist said regarding my accident. "But others could burst and succeed."Another side effect from the pill is the weakening of my immune system, but if I dont take the pill my kidneys and my other organs with the tumors are open to failure. I was scared, uncertain and feeling that I could just die either way. My mom then comforted me and said, "If I were in your shoes I'd do it. It will save your life and you could live a long life." I then decided to take the pill knowing that my chances of living longer would increase although my chances of experiencing pregnancy are zero. I know I will still have the chance to be a mother through adoption or marriage to someone who has beautiful kids that I can call my own. Still this news has brought me sadness, I know God allows things to happen for a reason. He has a great plan for me. He saved me in that accident. If it weren't for the accident I would have no idea how serious my health is. He gave me a chance to live on.. That accident was a blessing in disguise. I am so grateful to be alive. This day has definitely been a tough one with this news.. but I am so thankful for my family and friends that have given me love and support through this news. I also want my brother, Ashley to know I love him and that I think he is the most amazing guy. No one can stop us to fulfill our dreams on Earth no matter what!
I am a beautiful daughter of God. He saved my life. I was making decisions I knew were not the best and I know the accident was His way of saying "Holly, get your act together because I need you here!" It was such a blessing and because of that I will never settle for less and I will continue to reach for my dreams. Love the life you live. I am so blessed with so many in my life.
