Turning 1 and weighing only 12 pounds, Middleburg boy waits for a new liver

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MIDDLEBURG, Fla. – This week marks a big milestone for a Middleburg family we first introduced you to last summer. Ethan Hoeffer turns one.

RELATED: Jacksonville baby with mystery illness needs new liver, surrounded by love and prayers

Ethan is the size of a typical 2-month-old baby. His mom calls him her forever baby. As his family prepares to celebrates his first birthday, they continue to pray for answers as they wait for him to have a liver transplant.

Just 12 pounds and 6 ounces, Ethan Hoeffer has battled an unknown metabolic liver disease since he was born.

“It’s been one of the hardest and most humbling things I’ve been through,” said Jessy Hoeffer, Ethan’s mother.

She gives him formula through a feeding tube.

“But he’s still not growing like they had planned with it,” Hoeffer said. “They told us he would be 20 pounds with rolls, but metabolically he just doesn’t break it down. He doesn’t grow. He’s like our little newborn baby.”

Doctors have not been able to diagnose specifically what Ethan is up against, but his family is praying a new liver will give him a new lease on life.

“The past year has been a roller coaster of emotions. We’ve gone around and around not having answers,” Hoeffer said. “You think you’ll have answers with a simple blood test. Apparently, it doesn’t work like that. Having to settle with, ‘we may never have an answer’ is a huge thing for us right now,” said Hoeffer.

As the Hoeffers get ready to celebrate Ethan’s first birthday, he remains on the waiting list for a liver transplant.

He can’t crawl, walk or play with toys like many children his age, but seeing him smile and hearing him laugh are moments his mother soaks in as she treasures every day with him.

“There have been so many times I’ve wondered, ‘Is he going to make it to his first birthday?’,” Hoeffer said. “There have been times I beat myself up. He doesn’t even hold his head up. He can’t eat cake and do everything you would think of on a normal first birthday, but then it’s just more like he made it here, and that’s all I wanted.”

While they wait for answers and wait for a new liver, they’re hoping to find someone who has been through what they’re going through.

“There are so many people in the world I feel lose hope in certain ways, and I feel that is not an option for me, and we have come so far. Maybe somebody out there can give me hope that we are going to get through this.”

The Hoeffers have five children. Their daughter, Gracie, who just turned 10 is also battling health issues. She has Facioscapulohumeral muscular dystrophy, FSHD. Later this month she is scheduled to have a fusion. Her mother says it will take her about eight weeks to recover from the surgery.

If you would like to help the Hoeffers, they have a Go Fund Me page. You can follow their journey on the Ethan Hoeffer Facebook page.