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As two kids fight rare disorder, mom seeks to inform others about galactosemia

Only 1 in every 60,000 people have galactosemia, including two sisters in one Greenwood family.
Mother talks about rare condition

GREENWOOD, Ind. (WTHR) - Snack time for toddler Brooklyn Tagua is anything but simple, because the almost two-year-old chooses to be a picky eater.

"Goldfish, cheese crackers, Cheez-its, chips, certain chips, everything you think doesn't have milk but has dairy in it she cannot have," said Brooklyn's mom, Alyssa.

All of the foods Alyssa just listed can be deadly to Brooklyn because of a rare genetic disorder that prevents her body from digesting the sugar found in dairy products.

It's called galactosemia and only 1 in 60,000 people have it.

"It's very hard to feed a child every single day that has this," Alyssa said. She didn't realize her daughter had the disorder until she was nearly five days old and something didn't seem right.

"She would eat, but it wasn't as much as a normal baby would and I felt like something was wrong," Alyssa remembered. "My motherly instinct kept kicking in and we finally took her to the hospital and that's when we found out, but she was almost on her death bed."

A newborn screening blood test confirmed Brooklyn had the condition.

"I had never heard of it. When they first told us what it was, I was like, 'okay, what... what is that," said Alyssa.

There's no wondering anymore. Not only does Brooklyn have galactosemia, her 6-month-old sister Ava does, too. Ava's condition is even more severe.

"We have to be very careful because you never know what's in food," Alyssa said. "It's almost best to pack something for them, because if we don't, we don't know what we're feeding them."

So far, Alyssa hasn't found any other local parents in the same situation. She joined online support groups so she can keep learning for the sake of her daughters.

"It was a very difficult process of learning and becoming knowledgeable and I felt alone in the process," she said.

Now, this stay-at-home mother is speaking out, hoping to educate other parents who may at some point face the same battle.

"Now that I have that knowledge, I want to share it with other people so that they don't have to feel alone," Alyssa said.

Galactosemia is usually diagnosed in infants, often when they're having difficulties feeding. If not caught in time, it can lead to several complications, including liver failure and eventually death in the most severe cases.

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