The ENT doctor performed a cat scan of his skull because the dentist noticed some unusual spots on an x-ray. We learned that his sinus cavity is almost completely blocked, but at this time it is having no impact on him. We are now at the point that we only need to see each of the specialists once a year unless a problem arises. To date, Jake has broken his leg and has had multiple micro fractures in his ankle (separate incidents), and is a little more cautious when playing. The Magic Foundation When we finally knew what was wrong with Jake, we started doing our own research on the internet to learn as much as we could about the disease. One of the best sites we found was from an independent research foundation called The Magic Foundation. They specialize in multiple rare diseases. They have a division for MAS (McCune-Albright Syndrome), in which we were eager to get in touch with someone that had traveled down the road we were starting with Jake. We were put in contact with the division leader and asked what seemed to be thousands of questions. They were very patient with us and answered every question we asked. We were informed of an annual convention that was being held in Chicago, sponsored by the Magic Foundation. We immediately joined the Magic Foundation and started planning our trip to the convention. READ MORE

Web Site Donated By: John Noonan