Alex and TSC


Alex was born with a rare genetic disorder, Tuberous Sclerosis Complex. This is a neurocutaneous disorder which primarily affects the brain and skin, but also often involves the kidneys, heart, and lungs. Basically, persons with this disease seem to lack certain tumor-suppressing chemicals which results in benign tumors in many of the body's major organs and some pretty interesting skin markings. To learn more about the disease, visit the Tuberous Sclerosis Alliance. In Alex's case, he has a large number of brain growths, called tubers (hence the name of the disease), which are basically calcified brain tissue. You can see them-- whitish/grey areas-- in this MRI image of Alex's brain. The problem with that is that abnormalities in the structure of the brain tend to lead towards seizures. Since when most people hear "seizure" they think grand mal, I thought I should make it clear that Alex's seizures have been the much less dramatic partial seizures. The great news is that Alex has had only a few detectable seizures since the Fall of 2005 (he is, of course, on some pretty good anti-seizure medications). The bad news is that Alex's seizures and abnormal brain wave patterns have led to significant developmental delays. He's about as sweet and engaging a boy as you can imagine for having an autism diagnosis (very common in cases of TSC with early childhood seizures). After years and years of hard work, his language is coming along great. We used to wonder if he would ever talk and now some days we wonder if he'll ever stop talking . As you can see in the pictures, he's a delightful (not so) little guy with a really playful and impish spirit. Some days, though, we just have to laugh at the fact that Alex can be our easiest kid (which may say more about his nutty brothers and sister than anything). It's definitely hard at times, but Alex hugely enriches our lives with his incredible sweetness and joi de vie.

Back to my home page