Condition: Diffuse Cutaneous Bullous Mastocytotis
City, State: Woodinville, WA
Club: Lake Forest Park Elementary Sparrow Club Service Hours:
Date Adopted: 10/26/2015
My name is Lincoln. I am 7 years old. At 5 months old I started getting blisters all over my body and I had a hard time breathing. I went to the hospital and made all the doctors scratch their heads in wonder. They preformed a skin biopsy and sent me to the ICU. A few days later they diagnosed me with a rare disease called Diffuse Cutaneous Bullous Mastocytotis. They gave me a long list of things I need to avoid, because I could have an anaphylactic reaction. These include sunlight, heat, cold, stress, exercise, friction, many foods, and medicines.
They put me on medications, including steroids to control my disease. And boy do those steroids make you chubby!
In Dec. 2010 it snowed. My Mastocytosis did not like that and I spent 5 weeks at Children’s hospital. While there, I almost died! My mastocytosis caused a major gi bleed that no one knew about until it was almost too late. I received 12 pints of blood and two emergency surgeries that saved my life. (Everybody should donate blood, if they can)
This last year, I was finally able to come off steroids. I have several other medical issues: Colitis, Elhers Danlos, Axenfeld-Rieger etc. But I am learning how to live with my challenges and am grateful for each day.
I have 2 brothers named Grizzly 9, and Titus 5. They both have medical issues too! Between the three of us, we have spent every major holiday in the hospital. Hint: Hospital turkey is not even close to Grandma’s.
My family and I love to build Legos, read together, and play outside. I am a happy and sweet boy, who loves animals and imaginary play.
Once a year we take a trip to the National Institutes of Heath in Bethesda, Maryland, where they study my family and me so doctors can learn how to help others that might be like me.