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Riley Hospital for children provides schooling for patients

INDIANAPOLIS (WISH) — Ava Graham was born with hypoplastic left heart syndrome. That means the left ventricle of her heart was not working. By the age of four, she had three open heart surgeries.

“It’s not a typical delivery, especially when you know in advance, [and] especially when you know there’s going to be a problem. You don’t get the same time with your baby that you do when you have a heart healthy baby,” Ava’s mom, Jami Graham, said.

Jami says it’s not been an easy road, leading to Ava waiting on the heart transplant list.

“It’s getting hard waiting being here as long as we have and waiting as long as we have, and no end in sight. There’s no way to know when that wait will end,” Graham said.

Ava has now been at Riley for more than 125 days, just waiting. That means that when all her friends were going off to third grade, she had to start school a little bit differently.

“When we came here and decided to stay in patient and wait on this new heart, they have a great school program here at Riley with teachers, full time teachers. Our teacher here on the unit is Lindsay (Dewilde), she’s amazing, she’s great,” Graham said.

Lindsay Dewilde is what’s called an educational liaison at Riley. Essentially she’s the teacher for extended stay children.

“We just help navigate between hospital, patient, and school,” Dewilde said.

Lindsay spends an hour a day, five days a week with each kid, helping make sure patients like Ava are on track to complete their schooling.

“I’ve had kids here for an entire year. I’ve been their teacher for that entire year. They’ve gone to high school, they’ve graduated, [and] they’ve gone to college without being behind their peers,” Dewilde said.

It also gives the kids at least a little bit of normalcy, something as simple as that first day of school photo.

“We did one this year. We did it in the hall with Lindsay. I commented and said ‘not your typical first day back to school picture, but it’s what we need to do, it’s what were doing, and what we need to do right now,” Graham said.

“There are so many kids who get admitted over the summer and I am their first teacher, and I always think that’s something so special when they look back when they’re older, they’ll remember me as one of their first teachers,” Dewilde said.

If you’d like to follow Ava’s journey to transplant, you can follow her Facebook page.