My name is Nancy, and my daughter Atenea is three years old. She was diagnosed with Tuberous Sclerosis Complex (TSC) when she was 15 months old. Tuberous sclerosis complex is a rare genetic disorder that causes non-malignant tumors to grow in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. You will see the condition referred to both as tuberous sclerosis (TS) and tuberous sclerosis complex (TSC). The term TSC is used in scientific literature to distinguish tuberous sclerosis complex from Tourette’s syndrome.

TSC is caused by a mutation of either of two genes, TSC1 and TSC2, which code for the proteins hamartin and tuberin respectively. These proteins act as tumor growth suppressors, agents that regulate cell proliferation and differentiation.

The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed. Some people with TSC experience developmental delay, mental retardation and autism. However, there are also many people with TSC, living independent, healthy lives.

Despite Atenea’s condition, she is a happy and  intelligent little girl!!

For more information on TSC, watch this video made by the Tuberous Sclerosis Alliance.

1 thought on “Three Year Old Atenea Battles Tuberous Sclerosis Complex, Tumors and Seizures”

  1. patricia williamson says:

    im glad your daughter is so happy despite her condition. I have a 15month old that was officially diagnosed when he was six months old. we had an incredibly hard,stressfull,emotional six months from his first seizure at 4 months. then we had A great run, got everything under control and now just within the last week he began again to show signs that major seizures in his sleep are on the way. its truly amazing how long I can go without sleep just to make sure he is ok….I never could imagine us back where we were when he was real bad…I never thought that time would end. it did and now its back. its absolutely the worst thing ever not knowing whats next…knowing that there is nothing you can do as a mother to relieve your precious baby. and not a soul on this earth other than those involved with tsc patients have any idea what you as a parent go through on a daily basis…thanks for letting me vent..

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