Rare condition prevents toddler from eating food
He can't eat anything except breast milk
DETROIT – The smile 20-month-old Elliot Carter wears is infectious, which keeps spirits around him lifted.
His mom and dad, Leah and Dan Carter, do the same stressful packing routine almost every single week as they travel from hospital to hospital.
Elliot has a rare, severe condition: he can't eat anything except breast milk, which doesn't have enough nutrients to sustain him.
He can have ice, but that's his only snack.
His parents said they've noticed that as Elliot has gotten older, he's a lot more aware of food.
"He will literally crawl around on the ground and look for things," his mom said.
Once, one of Elliot's older siblings accidentally dropped a piece of Trix cereal. Elliot found it and ate it. The consequences lasted five days, giving him severe diarrhea, pain and discomfort.
To keep him alive, doctors put him on what's called total parental nutrition. It's the nutrients you need to survive. His parents said they noticed a difference in him within hours of starting TPN.
But the victory was short-lived. Soon, infections came, along with blood clots, anemia, heart irregularities and more.
Since October, Elliot has been in the hospital every month.
Hiis most recent trip was to Cincinnati Children's Hospital, where his parents hoped experts would have an answer.
"I don't need a name for what he has," Leah Carter said. "I don't need an official diagnosis. I just want to see a year from now. I just want to see five years from now. I want to know that he's going to be with us."
But his trip to Cincinnati didn't go as planned. Instead of getting answers, they ran into more problems. He had to have blood transfusions and was even quarantined.
"I worry about this not being as (bad) as it could get," Leah Carter said.
There was a small glimmer of hope that after three weeks Elliot might get to go home. But his family began packing up his belongings at the hospital, only to be met with more disappointment. His dad and siblings would have to leave Elliot and his mom behind -- again.
Another difficulty for Leah Carter is that she's missing out on things going on with her other kids.
"We're forced to choose, so it's tough," she said.
But just as tough is Elliot, despite being tied to an IV pole -- despite being stuck in a hospital.
"I don't know that there's a light at the end of the tunnel, per say, but I feel like we're heading in the right direction," Leah Carter said.
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