Rare disease means strict diet, but Alex is ‘OK with it’

Forget about cake — how about a nice birthday steak, instead?
When Jane and Ed Salem tell their son, Alex, 12, no cake, pie or dessert, it’s not to punish the 12-year-old Strongsville boy — it’s a life-saving order based on love.
 hspace=5 src=Strongsville’s Alex Salem wears a lanyard decorated with buttons representing Children’s Miracle Network sponsors. Alex loves baseball and hopes to coach a professional team one day. Sun photo by Jim Votava.

In fact, forbidden foods for Alex, who suffers from an extremely rare genetic disorder that prevents his body from metabolizing carbohydrates, include all breads, grains and pasta and nearly all fruits and most vegetables.
Instead, Alex, a seventh-grader at Albion Middle School, has a daily diet that consists mainly of a carbohydrate-free soy formula base with iron.
He is also permitted to eat chicken, burgers, fish and eggs and he can have some cheese and pepperoni, but no pizza.
“We also make him cookies from a soy powder and we make pancakes out of that, which is what he usually has for breakfast,” Jane said. “We found the recipe on the Internet.”
“One of my enzymes is gone,” Alex said, explaining that the condition doesn’t allow his body to break down carbohydrates or sugars.
If he were to consume conventional foods that are eaten without concern by most of us, it would result in a dangerous buildup of lactic acid and almost certain damage to his nervous system.
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