How can somebody so young deal with something so big their entire life? From day one until the very last breath they take? Not knowing what the day will bring or what will happen?
It all began in June in 1994 when I was conceived and my parents wanted a baby. The doctors told them that there would be a 50-50 chance that the baby they have will inherit the disease. My parents thought they would have a baby and that the baby would never have the disease. Nine months later in April, my mother went into the hospital and was in labor for 3 days with me. On April 24th, 1995 I was born. So tiny, but I looked healthy. Everyone thought I was okay and that they proved the doctors wrong. That is until my Grandpa Cliff, my mom’s dad, came to see me. He searched me head to toe, front and back. Made sure I had all my toes and fingers. My grandpa saw a tumor on my back. I would soon be diagnosed with the disease and scheduled for my very first surgery.
I had the terrible disease nobody wanted me to have and hoped that I wouldn’t have. I had Gardner’s Syndrome. And from day one I have been battling this disease and making many trips to the doctor’s office and to Duluth, MN, for multiple procedures. Most people that have this disease don’t normally show signs of it or develop it until around puberty. However I was only 18 months old when I went into surgery to get the tumor I had on my spine removed, before it wrapped around my spine and paralyzed me.
How do you bring a child into this world with a huge disease like that? I don’t hate my parents for; it I just wish I knew why they would want their baby to live with that. What if your child was going to die and you had to bury them? How could you live with that or yourself? How can one thing affect so many people in so many ways?
People are always asking me questions about my body defects or if there is a cure for my disease, or if I was dropped or bumped my head. No, I did not bump my head, I did not get dropped. I have multiple tumors all over my body and most of them can’t be removed because they grow back; at least most of them grow back. There is no cure for Gardner’s Syndrome, and there probably will never be a cure for it. There have been many doctor visits, surgeries, and many medications. If you have Gardner’s Syndrome, you need to have medical insurance, because you always need to go to the doctor. I can’t just forget about it or my body will be destroyed.
I am 18 years old and I have had 3 major surgeries, one minor surgery, faced colon cancer and I’m still here to tell my story. I wouldn’t wish this awful disease on anyone. It is not something to want or mess with. It has killed many of my family members. I will be lucky to live past my 50th birthday.
Gardner’s Syndrome is very rare. It gets passed down from generation to generation. It is a subtype of familial adenomatous polyposis (FAP). Masses of noncancerous tissue form in many different organs, like multiple adenomatous colon polyps. A polyp is an area where normal cells that line the inside of the colon begin to make mucous and form a mass on the inside of the intestinal tract. Benign tumors including: sebaceous cysts (closed sac filled with liquid under skin) Epidermoid cysts (lumps in or under the skin often filled with liquid) Fibromas ( Fibrous tumors) Desmoid tumors(fibrous tumors that can develop anywhere in the entire body) Osteomas ( bony growths, usually found on jaws). People with this disease have higher risk of getting cancer. Some cancers that can develop are: colorectal cancer, small bowel (intestines), pancreatic, papillary thyroid cancer, Hepatoblastoma (a type of liver cancer), Brain/ central nervous system tumor, stomach, Bile duct, and Adrenal gland cancer.
Screening and testing for some of these conditions begins around the age of 5. Every year, or for me every 6-8 months, you should have a colonoscopy done. This procedure will look to see if any polyps have grown and detect them. Most people with FAP will typically need a colectomy. This is a surgery for removal of the entire colon. Many examinations are needed to monitor my health. Do not put it off. Keep your medical up to date.
Between the age of 12 and 17, I didn’t go to the doctor because I had no medical insurance. When I finally did, I had so many health problems going on I wasn’t aware of. I had colon cancer that I didn’t even know about. My world came crashing down. There I was 17 years old with cancer. I never thought it would happen to me. But it did, and my parents felt awful. They kept blaming themselves for it. Every time the word cancer, or my name would come up everybody would cry. I was so scared. I thought it was my time to go... But thankfully the surgery was successful and I no longer have cancer. And I can go on to fight many more battles with my disease and inform more people about it.
Even though I’m young I know a lot more than many adults. I think it is important for people to acknowledge how other people’s lives are not always perfect. Don’t treat them how you wouldn’t want to be treated. I am living my life and doing what needs to be done. Are you?