The following text has been written in chronological order of the events as they unfolded over the last few years. We hope to provide you with an understanding of both the discovery of the diagnosis and of the disease itself. This text has been provided by Jake’s parents. Discovery History On February 9, 1996 our second son Jason (Jake) was born. Jake was born without any birth marks on his body, not until about a month after birth Jake started to develop birthmarks on his face. We took him to our pediatrician and the first question he asked was whether or not his father was African American. We informed them we were both white and they proceeded to march five doctors into the room to look at Jake, they were all puzzled. The doctors quickly referred us to Philadelphia’s Children’s Hospital. The doctor’s there started by checking for a neurological disease and determined that the birthmark was the wrong shape. An ultraviolet light over his body was able to pre-determine where the rest of the birthmarks were going to appear (on his arms, chest, and back). After several tests, they declared them as café au late spots and told us that there was nothing to be concerned about, it was just cosmetic; we never gave them much thought at all. READ MORE

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