My sweet Will

Hello friends,

When Will was 5 months old, I noticed a patch on his lower back. It looked like raised flesh colored stretch marks. When Will was a year old, my pediatrician asked that I see a dermatologist. The Dermatologist said that it was a Nevus of some sort and that it would all come together and turn dark Brown. My Pediatrician thought I should get a second opinion. We got one and she referred us to the Neurologist. She said it looked like a Shagreen Patch.

Will’s Neurology appointment was on Wednesday, April 9th. Will was diagnosed with a Shagreen patch which is commonly associated with tuberous sclerosis. He is going through genetic testing to see if he does have tuberous sclerosis. If he does, his case could be very mild (no real problems at all) or severe (possible growths on his major organs including the brain.) Here is a brief description…

Tuberous sclerosis--also called tuberous sclerosis complex (TSC)1--is a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. It commonly affects the central nervous system and results in a combination of symptoms including seizures, developmental delay, behavioral problems, skin abnormalities, and kidney disease.

We know for sure that Will is not delayed in his cognitive development at all. He could name letters and numbers at 1yr and ½ (we love to show that off!) At two he could match up your car with one of his from his Hot Wheels collection. He is just so brilliant! Of course, I’m not biased at all! He does not have behavioral problems, and seems quite healthy. Our prayer is that he has NOTHING at all!

Will has numerous appointments that will further test for TSC and tumors. Please keep us in your prayers as we learn more about Will's condition and TSC.

If you have a prayer list at church, I ask that you please put Will on it.

I will keep you informed as we all learn more.