Lifestyle & Human Interest

Sick 1-Year-Old Only Weighs 12 Pounds, Desperately Needs New Liver


When your child is sick, or starts developing concerning symptoms, you go to the experts. You trust that they’ll be able to give you some concrete information, help you understand what your child is dealing with and plan a course of action.

But as knowledgeable as many doctors are, there are plenty of conditions that are still misunderstood or not understood at all.

The Hoeffer family in Middleburg, Florida, has dealt with that reality for years now, since their daughter, Grace, has been dealing with FSHD (Facioscapulohumeral muscular dystrophy). But their youngest, one-year-old Ethan, doesn’t have the luxury of a name for what he’s experiencing.

Though he’s a year old now, he’s the size of a 2-month-old, which is why mom Jessy Hoeffer refers to him as a “forever baby.” His Facebook page reads “Ethan has an unknown metabolic liver disease, Gracie has FSHD MD, and we have 3 other children.”

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“It’s been one of the hardest and most humbling things I’ve been through,” Jessy told 13WMAZ. At first, Jessy was hopeful that the doctor’s recommendation of using a feeding tube to give Ethan formula would help him bulk up, but that has not worked.

“But he’s still not growing like they had planned with it,” she 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.”

“The past year has been a roller coaster of emotions. We’ve gone around and around not having answers. You think you’ll have answers with a simple blood test,” the mother admitted.

“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.”

There are many things little Ethan can’t do that most others his age can, but at least he is still with them — which was never a guarantee.

“There have been so many times I’ve wondered, ‘Is he going to make it to his first birthday?'” Jessy said.

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“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.”

But Ethan is not the only one in the family with medical needs — his sister Gracie is going in for surgery at the end of April. The Hoeffers have started a GoFundMe page at the request of friends and family who’ve asked to help out monetarily.

So far they’ve received around $7,000 in assistance, but what they’re really hoping for, of course, is a new liver for their son and a healthy family.

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Amanda holds an MA in Rhetoric and TESOL from Cal Poly Pomona. After teaching composition and logic for several years, she's strayed into writing full-time and especially enjoys animal-related topics.
As of January 2019, Amanda has written over 1,000 stories for The Western Journal but doesn't really know how. Graduating from California State Polytechnic University with a MA in Rhetoric/Composition and TESOL, she wrote her thesis about metacognitive development and the skill transfer between reading and writing in freshman students.
She has a slew of interests that keep her busy, including trying out new recipes, enjoying nature, discussing ridiculous topics, reading, drawing, people watching, developing curriculum, and writing bios. Sometimes she has red hair, sometimes she has brown hair, sometimes she's had teal hair.
With a book on productive communication strategies in the works, Amanda is also writing and illustrating some children's books with her husband, Edward.
Austin, Texas
Languages Spoken
English und ein bißchen Deutsch
Topics of Expertise
Faith, Animals, Cooking