We'll give everything, but UP!

My name is riley and this is my tsc story

Dedicated to raising the awareness and a cure for Tuberous Sclerosis Complex (TSC)

Hi!   My name is Riley.  


There's more to me than meets the eye.  I'm a happy, strong willed girl who has great passion for life and laughter.  My mother would tell you I am funny and fierce and have the world's best big brother, Jaxson.  I love music, dancing, playing sports and being with my friends. I am a proud member of Brownie Troop 68183 but also a member of the Rare Epilepsy Network (REN).  I hate needles and most importantly I love being with my family.


When you see me, you may not notice that I have Tuberous Sclerosis Complex (TSC) and that it has left me with developmental issues.   That's ok, most people have never heard of the disease and it's hard to pronounce.   TSC impacts every person differently and it is important to know that there is no cure today.    I share my story to help raise awareness and do my part to help find a cure for those come behind me.  No kid should have to live with TSC.


How did my family find out I had TSC?   Around my 1st birthday my epilepsy started.    By the time I was 15 months old I was diagnosed with TSC.   The doctors soon found clusters of tumors in my heart, brain and on my kidneys.   My family was devastated.   However, that was just the beginning my unpredictable story.


When I was 2 years old I began to regress and started losing the ability to hold things like a crayon and a spoon.    I even lost most of my vocabulary and ability to converse well.   My seizures changed and were occurring at night while I was sleeping. TSC has a knack of throwing new problems at me when we least expect it.  Luckily, we have found a medicine that helps control my seizures now.


When I was 3 and 4 years old, we began to see other impacts of TSC.  Tumors grew on my skin and I had pits in my teeth enamel.  Before I knew it, I had to undergo two oral surgeries to help maintain my oral health.  


At age 5, one of my brain tumors began to grow in a dangerous location.  By the time I was in kindergarden my family had to make a decision to put me in a clinical trial taking medication in hopes to shrink the brain tumors.   The medicine did help shrink my brain tumors but, I was badly impacted by the side effects of the drugs.   Just 4 months after completing the clinical trail, my tumors grew back larger than ever.


In first grade the doctors told my parents that one of my brain tumors would require surgery or I would have to permanently go back on the medicine that made me sick and has serious long term side effects.   We decided on having brain surgery and the doctors at Boston's Children's Hospital did an amazing job.


TSC is as stubborn as I am. The tumor has since grown back and we are faced with the same problem.  The decision of brain surgery is not if, but when.    It doesn't stop there because TSC is unpredictable. It effects everyone in different ways and my story has just begun.  My family and I are doing what we can to fight this horrible disease, but remember there is no cure for TSC


Please help Rock 4 Riley raise awareness and money for TSC, the TS Alliance, and their efforts to find a cure.


My name is Riley and #IAMTSC. 

All Rock 4 Riley proceeds go directly to the TS Alliance