Your Health: Diffuse cutaneous mastocytosis - WAFF-TV: News, Weather and Sports for Huntsville, AL

Your Health: Diffuse cutaneous mastocytosis

(Source: RNN) (Source: RNN)
MERIDIANVILLE, AL (WAFF) -

When Kellie Ewell's son was born, there were a lot of questions and no immediate answers.

"He was born covered head to toe with hives, blisters, nodules, and doctors had no idea what was wrong with him," she said.

Doctors everywhere were looking for a diagnosis. And by sheer luck, a doctor in Afghanistan saw his pictures and recommended testing him for mastocytosis. So at five days old, they did a skin punch biopsy on his side and found mast cells when they stained it.

Now the question had an answer.

"Gage was born with a rare disease called diffuse cutaneous mastocytosis," Ewell said.

Cells normally release histamine when an allergen is introduced to the body, but with Gage, the chemicals are released all at once and all the time.

"It causes hives, blisters, flushing, stomach pain, nausea, vomiting," said Ewell.

The condition is extremely very rare and enlarged the spleen and liver, yet Ewell said both function normally.

"He takes three different histamines, and that's the only way to control the symptoms. There is no treatment for this. He will never outgrow this," she said.

She said the only thing they can do is manage those symptoms.

This diagnosis was very hard to come by. There were several different guesses but none of them added up. When they finally got a true diagnoses, the parents reacted differently.

"And I get back up there and there's about 30 doctors in the room. And Kellie's not doing well, said the baby's heart has dropped and everything so they freak out, which makes me freak out," said Joshua Ewell.

This was especially hard because he recently lost his mom.

"And as a father, I'm supposed to be able to fix everything and I can't," he said.

With doctors working on Kellie and Gage carried away to the NICU, Joshua was left alone in the hallway and scared.

"It was the hardest thing I'd ever done," he said.

He said Gage has changed the family for the better. He feels blessed with two little ones with distinctive personalities.

"Acceptance is accepting people for what they are, their flaws, and making better what you can make better and giving people the opportunity to succeed regardless of what hinders them," he said.

That philosophy will center his family and guide them in the future.

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