Coni Adams wrote -
When I gave birth to Jonny boy approx 3pm on 9/16/11, he was immediately brought into the NICU for most of the day. He came back to my room around 8pm so I could finally feed him. I noticed that he had, red bumps on his face and trunk and thought nothing of it. 3 years later, I now know, his body was reacting. When Jonathan was about 4 months old, my husband & I took him to consult with Dermotology, about a brown/pinkish spot on his stomach. I was petrified thinking the worst. We saw the Dermotologist, and found out Jonathan had a rare skin disease called Urticaria Pigmentosa. We were sent home with a piece of paper that explained everything we had to avoid. Now at 3 years old he has just over 100 spots on his body. Although he is a happy baby, it has been a challenge and I believe we have yet to deal with, the toughest part of this disease. I am so very grateful to have such amazing Dr.'s in Boston and would love to help them help Jonny boy and everyone else dealing with Mastocytosis.