Ethan’s fight: Live every day like it’s your last

Posted at 12:10 AM, Feb 10, 2016

GRAND RAPIDS, Mich. --  After learning their little boy may not live long, a  West Michigan couple began inspiring others to live every day like it's their last.

Baby Ethan was born three months premature and suffered from severe health issues. Now at 3-years-old, he spends his days in palliative care and is unable to speak, eat or talk.

FOX 17 recently caught up with the family to talk to them about their journey. Ethan may have some challenges, but he's certainly prospering in his ability to love.

"You have certain expectations of how life is going to be," said Brian DeHoek, Ethan's father. "It’s very difficult. I mean for him, it’s the only life he knows."

Ethan is living a life full of pain, but hope rings true in a world of fear and uncertainty. Doctors tell the family his organs will eventually shutdown.

FOX 17 talked to Brad Hemker, the Chief Pediatric Palliative Care at Helen DeVos Children's Hospital for more insight.

"He’s fed completely through an IV," said Hemker, "He can’t take any food through his mouth or G-tube. He does have a tube in his stomach to help drain fluid out."

Every system in Ethan's body is struggling, except his heart.

"I mean when you think of having kids, you never envision things to go wrong. You picture them playing outside, going to school, first dates, getting married, and for him, it’s going to be cut short."

His parents aren't sure when they will have to say goodbye to Ethan.

"We know how quickly it can change."

The only way he'll survive is if he has a multi-organ transplant, but it will place Ethan in even more pain.

"We look at how happy he is now. Does it really make sense to open him up, put him through a major surgery, if the benefits just aren't there?"

The family decided to let Ethan enjoy life, no matter how short in may be.

"I’m sure we probably always will second-guess ourselves," said DeHoek.

No matter the struggle, Ethan has an impact on people on the lives he touches.

"We’re both better people because of him. We don’t sweat the small stuff, because you don’t you realize how quickly life can change and how you have to enjoy every moment."

A fundraiser will be held for the Palliative Care Program at DeVos Children's Hospital will be held April 23rd.

A GoFundMe page has been set up for Ethan. Click here if you'd like to donate.