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Seven days after Adam Clarke was born to proud parents Bonnie and Steve, the family received news that changed the way they will live for the rest of their lives.

“The newborn screening was how we found out,” Bonnie told KTW.

“We didn’t know at all what it was.”

Adam, born on Feb. 20, 2008, was diagnosed with medium-chain acyl-coenzyme A dehydrogenase deficiency (MCADD).

The disease is rare.

Bonnie said Adam is the only person in Kamloops with the condition.

“There’s a medium-chain fat he can’t break down,” Bonnie said.

“He has to make sure he’s eating every three hours.”

Bonnie used the example of someone who is laid up in bed with a bad cold. A person without MCADD would be able to last hours and hours without consuming food.

Adam’s body would go into metabolic decompensation — meaning he would starve.

Now a happy five-year-old months away from his first day of kindergarten, Adam’s condition is treated with snacks.

Lots of snacks.

“It’s wake up, juice, breakfast, snack, lunch, snack, dinner, snack,” Bonnie said, adding that a mixture of milk and corn starch before bed lets Adam sleep through the night without needing to eat.

“The corn starch expands him out so he can go 12 hours without eating.”

He also takes medicine three times a day, which helps his body flush out fats he can’t break down.

Until recently, the Clarkes were making twice-yearly trips to BC Children’s Hospital in Vancouver so Adam could get checkups.

Now that he’s five, though, those trips to the Lower Mainland will become yearly.

Bonnie also has a letter to present to emergency-room staff at Royal Inland Hospital in case Adam gets sick.

Because of his condition, any vomiting or diarrhea could prove fatal if immediate action isn’t taken in the form of a special IV.

With school on the horizon, Bonnie said Adam is starting to take ownership of his condition.

“He knows now to ask, ‘Can I have that or can I not have that?’” Bonnie said.

“He’s getting there. He knows he can’t have everything the other kids have.”

Today (Feb. 28) is International Rare Disease Day. In Vancouver, a presentation and question-and-answer session is taking place at BC Children’s Hospital.


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