We were blessed to welcome Patrick into our lives on February 28, 2014. He’s always been slightly difficult in terms of colic and sleep – but we figured he was just more high maintenance and loved to be loved on/held/paid attention to. In mid-August we started to notice spots on Patrick which we soon realized were called ‘Cafe Au Lait’ spots. Patrick didn’t have just one or two, he had about 14. Upon doing a little more late night researching, we learned that Cafe Au Lait spots are very indicative of Neurofibromatosis. I could barely say it let alone wrap my head about the fact that my little guy was facing a diagnosis that would change our lives forever.
Although life seems mostly normal today, we can’t help but wonder when a simple headache is a tumor, if what looks like a pimple is a neurofibroma, what learning and developmental issues are related to NF, and the list goes on. We must find a cure. We pray for a clean MRI in mid-Nov, and pray for the NF families.