Day 11 of Blogging for TSC Awareness

by guest blogger Tanya Sloan-Bates (Athens, Tennessee)

We tried for several years to get pregnant, fertility treatments were our last hope.  Finally, our prayers were answered and God blessed us with our son, Noah; our amazing little man.  We were so excited.  We never thought we would get pregnant without fertility treatments.  However, God had a different plan.  A few years after the birth of Noah, our miracle baby arrived, Molly.  She was a beautiful, healthy baby girl!

When Molly was six and a half months old, we started to notice how she was making peculiar movements.  At this time, my husband was working out of town. Molly began to scream and cry and act as though her stomach hurt.  During this week, we went to the Children’s Hospital twice and her pediatrician’s office three times. Each time the doctors would run a series of tests.  Every time the tests came back normal and nothing was concluded.  We were sent home with various medications for stomach aches.  Yet, I knew something was wrong; something was wrong with my baby and no one would believe me.

In 2014, on Christmas Eve night, my husband made a comment that I truly believed saved our little girl. He said, “I hope it isn’t neurological.”  We immediately went to the internet and Googled “neurological spasm.”  A list of websites and information appeared before us; some of them videos titled “Infantile spasms, seizures.”  The more we watch and read the more we were convinced this is what our precious daughter was suffering from these vicious spasms.  The suggestions were to see a neurologist as soon as possible. So, the day after Christmas we called her pediatrician. They sent us directly to the Emergency Room. Doctors were finally beginning to listen to us and an EEG was ordered.  It was later confirmed, she was having infantile spasms (seizures) with hypsarrhythmia; a catastrophic form of epilepsy.  She was having up to 300 seizures a day.

From there, we were admitted to Children’s Hospital in Knoxville. Molly had an MRI scheduled for the following day.  Tubers/tumors were found on her brain. Our sweet baby was diagnosed with Tuberous Sclerosis Complex (TSC).  Our world had been turned upside down for weeks, but now, now there were no words to express our emotions; we were numb.

Molly was put on a medication to help with the seizures and it didn’t work.  We then went to Birmingham and saw a pediatric physician who specialized in TSC.   They placed her on another medication that we had to inject into her through a shot.  While on this medication, Molly lost her sweet and innocent personality.   My seven month old baby no longer engaged with anyone, smiled, or played; instead she was lethargic…my heart was broken!  After time, we found the correct medications and gained control over her seizures.  Molly gained her smile back and started to flourish.  She was seizure free for four months!  I remember driving home one night in July and being so happy and grateful  at how well Molly was doing; how much she had overcome!  Then, that very next day, my fears resurfaced.  Molly began to have complex partial seizures.  It was starting all over again!

Over that past eleven months, Molly tried several different seizure medications. They have helped, but we still do not have complete control over her seizures. Currently, Molly is on four different seizure medications, she has physical therapy, occupational therapy, and speech therapy weekly.

If you look at Molly, you see a beautiful, almost two year-old, red headed toddler.  She is amazing and an inspiration.  Molly’s vocabulary is currently limited; however, she has no problems making her point clear and letting you know what she wants.  Her personality is one of a kind.  She currently has brain, heart, and skin involvement. Although, we don’t know what tomorrow may bring, we are thankful for each second!  We will never take her smile for granted!  Even though Molly may face more challenges and obstacles in life, we will continue to stand by her and help her grow and fight for a cure! Although Molly may have a disability, her disability does not define who she is.