Diffuse Cutaneous Mastocytosis Won’t Stop Gage
May 12, 2013
Gage was born with a rare form of an even rarer disease called Diffuse Cutaneous Mastocytosis (DCM). He has struggled so much with thickened, red skin, blisters, hives, flushing episodes, skin and bone pain, as well as stomach pain and uncontrollable, fierce itching. DCM has caused him to struggle to feel normal and to complete tasks that most 19 month olds can do without a second thought. Despite this, he has a smile that lights up a room and a fearless personality to match.
His medications have changed many times in the past year and a half, and it seems that we have finally found a medication regiment that controls his symptoms well enough that he can focus on doing the things he loves (like dancing and chasing his dog around) and not spending all of his time scratching his skin until it bleeds or pulling out his hair. His current medications are primarily antihistamines which control the amount of histamine within his body and keeps the levels from rising to the point that he is severely reactive and at high risk for anaphylaxis. His medications are Atarax, Zantac, Allegra and Singulair – all of which he takes multiple times a day, as well as having special lotions and bath soaps that keep his skin soft and moisturized in order to keep him from scratching and hurting.
His doctors recently found that his spleen and liver are markedly enlarged and he will need to undergo a bone marrow biopsy to determine if his disease has progressed from cutaneous (just in his skin, which can go away) to systemic (throughout his entire body and organ systems, which he will have for life). He was also diagnosed with macrocephaly (enlarged head), which has thankfully been ruled as benign, and he should grow into it as he grows. He has been through so much in his short 19 months of life, but he fights every day to be the best that he can be. The staring and comments from those who do not know his disease never get easier and can be cruel at times, but his smile and friendly “hi!” warms the hearts of everyone around him.
We are still so unsure of what the future will hold for him, but his symptoms are improving every day and his will gets twice as strong at the same pace. He is continuously fighting to live life to the max, and he is changing the world one smile at a time.
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