Let The Love Guide You: One Mother on Caregiving for Her Child with Tuberous Sclerosis

April 8, 2015

I fell in love with her the moment I saw her.

She lay nestled in my arms and smelled so sweet (a newborn’s perfume.)  I saw so many things, so many possibilities as I gazed down at her. I had no way of knowing that at six months she would begin having seizures and ultimately be diagnosed with a disease called Tuberous Sclerosis.

TS effects 1 in every 6000 births. A disease hallmarked by benign tumors, epilepsy, autism, mental handicap, and skin manifestations. TS can be expressed from mild to severe. My daughter, Deborah Ann, would be severely affected by this unrelenting disease. In 25 years she has had five brain surgeries, congestive heart failure, severe mental handicap, autism and thousands of seizures.

She currently functions as a two year old. Presently she has brain, kidney and heart involvement. She is seen by a neurologist, cardiologist, and a urologist. Our goal is to keep her seizures under control and to watch for tumor growths. I never knew how it would feel being the mother of a child with a rare disease, but the one thing I have learned is that the love never changes. Everything can be tossed and thrown to the wind but love holds us together. She is a fighter and my hero. I guess what i would say in this world of “rare” is to become as knowledgeable as you can be about your child’s condition and let the love guide you.

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