'We feel every moment of every day'

For only being 4 years old, Eli Ashby has been through more than most people experience in a lifetime.

He was born with a hole in his septum and pulmonary stenosis, which is an obstruction of blood to his heart. He's spent two birthdays in the hospital. He's undergone two open-heart surgeries. A vertical pink scar tells the story of the work that has been done to keep the heart in his little chest beating like it should.

One procedure to stitch a cleft on his heart only lasted six months.

"He went into heart failure," Eli's mom, Jenn, said Friday afternoon. "He went into heart failure on his 3rd birthday."

But anyone who meets this polite little boy would have no idea that his heart has a valve made of titanium and plastic, or that his heart goes out of a natural sinus rhythm so he'll probably need a pacemaker before he even gets to first grade.

To compound things, he has a rare platelet disorder that doesn't allow his blood to properly clot. It's something Jenn said doctors don't even have a name for yet.

"It’s just been so rough for the little guy. After year after year of things for him, to know that he might need a pacemaker, you know, I’m just ready to have him be normal for a while,” she said, her eyes welling with the tears of a frustrated mother. "But throughout the whole thing, you’d never know that anything ever bothered him. Even in the hospital, he’s got seven IVs, two in each limb, one in his neck, and he’s still, ‘Please’ and ‘Thank you’ and ‘I love you Mommy.'"

Eli's sweet and charming personality has won over every nurse and medical staff member he's met, and one of those nurses nominated him to receive a wish through the Make-A-Wish Foundation.

Jenn said Eli and his big brother, Andrew, 7, love the beach and the water, and when Eli was stuck in the hospital recently one of the only things that soothed his exhausted and scared mind was scenes and music of Hawaii.

"Any time anyone would come into the room, he was just terrified,” she said. “We would use the in-house channel that they have in Seattle of Hawaii and it was light music and pictures of beaches."

On Saturday, Jenn and their family had a Make-A-Wish reveal party to let Eli know that his wish to be on Hawaiian beaches is coming true. And not just anywhere in Hawaii — Aulani, a Disney resort.

“The valve is super sticky because it’s foreign, so any sort of bacteria that would give you or I a cold could infect his heart and kill him,” she said, explaining why they won't be going to Disneyland or somewhere more known among children. “He doesn’t understand what anything is, but he wants to go to the beach.”

Jenn said it kills her to know what her little guy is going through and that he will probably never be able to play football or ski, but their family remains strong and focuses on the positive.

"The guarantee that the valve will even function tomorrow is not there. The leaflets can stop closing and it will all be over,” she said. “But we can’t think about that. We feel every moment of every day and we try to be positive and loving and kind all the time and that’s what gets us through."

Before he knew he would get to spend time at Aulani, Eli said he's looking forward to "going swimmin'."

"For us to be able to go and be together and not focus on anything but us will be amazing," Jenn said. "It’s not focused on his illness, it’s just focused on our family and him and what he wants for once, because he hasn’t been in control of anything.”