Tackling Our Daughter’s Rare Disease with Special Olympics

Editor’s Note: The following is a guest post blog from Sharon Lackey, the mother of a Special Olympics Athlete

We found out that we were having a baby on our 9 year anniversary. We were in disbelief because we didn’t think it would ever happen. I had a normal pregnancy and Whitney was born a healthy baby girl. Two months later our world was rocked to its core when Whitney began having seizures and was diagnosed with tuberous sclerosis complex (TSC). We had never heard of this rare disease, and the outlook the doctors gave us at the time was that she would probably never walk or talk.

Imagine now, 17 years later, our intense excitement that Whitney will be competing at the 2014 Special Olympics USA Games representing Team Tennessee!

Whitney’s road to the USA Games has had its fair share of challenges, for both Whitney and my husband Brent and I, which makes us that much more proud of what she has overcome to get here. When Whitney first received her TSC diagnosis, we were told that in addition to the seizures, Whitney also had heart, brain and skin tumors. We were devastated and confused to learn what our 2-month-old was going through and committed ourselves to learning everything we could about the disease, especially because resources were so limited at that time.

We read that TSC affects each person differently and that symptoms change over time, so we weren’t sure what to expect as Whitney grew older. TSC causes non-cancerous tumors to form in different organs, and can also lead to resulting conditions like epilepsy, autism, developmental delays and behavioral problems for some people living with the disease. Fortunately, the original prognosis we received from the doctors was incorrect and we were overjoyed and relieved when Whitney started walking at age 2 and talking by age 4. When Whitney was seven years old, we moved to Lebanon, Tennessee so that she would be able to enroll in a special education program at school, which has provided her with a helpful learning environment and set her up for success.

Whitney began participating in Special Olympics outside of school at the age of 12 when a friend told us about the Wave Makers swim team. Whitney began practicing with them and competing in the area and state events. This became the highlight of her week to be able to go to practice a few times a week and participate in a sport she loves.

Two years ago her swim coach decided she would start a bocce team and of course Whitney wanted to be a part of that also. They began practicing and Whitney made the state last year and she was put in the drawing for nationals.

Today, Whitney is still coping with challenging conditions associated with her TSC, such as kidney tumors called renal angiomyolipomas and skin tumors that look like acne called facial angiofibromas. She visits a team of doctors at the TSC Clinic at Vanderbilt to make sure her tumors are regularly monitored so that they don’t grow too big and pose any potential dangers, especially during her athletic events.

Whitney has always loved being outside and participating in any kind of sport. She has participated in many school wide Special Olympics events. Even though her doctors told us when she was an infant that she may never even walk, she currently bowls, plays baseball on our local league and she is on the Special Olympics swim, basketball and bocce teams. Special Olympics has given Whitney the opportunity to do what she loves, and her determination to compete and not let TSC bring her down inspires our family every day.

Today on International TSC Awareness Day, we want to spread the word about TSC and let the world know that despite this diagnosis, you can live a very happy life and achieve goals that are far beyond your expectations.

Please follow Whitney’s Special Olympics competitions on the TSC Road to Special Olympics Tumblr page: www.TSCAthletes.tumblr.com.