Mandan family spreading awareness about a rare heart condition

Published: Feb. 16, 2023 at 7:47 PM CST
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MANDAN, N.D. (KFYR) - At just six months old Aiden Bride DeMarrias has gone through more medical challenges than most people endure in a lifetime.

He has a rare condition called pulmonary atresia with a double inlet left ventricle, and a leaky valve.

In simpler terms, he was born without parts of his heart.

At just two weeks old, he underwent his first heart surgery and is now in search of a new heart.

Aiden is staying at Mayo Clinic and has been there since early January. His parents are staying positive during his medical journey even though he had open heart surgery immediately after he was born.

“He’s a miracle little boy, and he is so strong. And I don’t even understand how, like I don’t understand why he has to go through this. He is fighting for his life right now. He’s such a brave little man and I cannot wait for him to come out of it and talk about how strong he is and how he overcome this,” said Kailie Bride DeMarrias.

One thing that’s brought his family comfort is knowing there are other people going through similar challenges who also want to share their stories.

“That you are not alone. There’s always support here,” said Dakota DeMarrias.

His dad is especially thankful for his job at Kramer Chevrolet, which has been accommodating his needs.

With the support of the community, they’ve remained strong.

“I have my days where I want to just give up but you can’t give up, but I have my days where I’m hopeful. I’m hopeful. And I cannot wait for the day that we get to take them home and how proud of heart warrior parents we are,” said Kailie.

They hope to bring comfort to other parents in the same position, especially since they just want him to have a normal childhood.

“And he should be doing little baby things right now, playing with toys and eating baby food. Like snuggling his brothers and sister and his mom and dad. That’s what he should be doing. Instead, he’s just sitting in a hospital bed,” said Kailie.

The family is hoping to be reunited soon after spending months apart.

“It kind of feels like we’re broken because we’re not together. And then when we are together it will feel whole again,” said Dakota.

The doctors say it could be a couple of days, weeks, or even months before they can get Aiden a heart. The parents want to let other families going through similar challenges know there is always light at the end of the tunnel.

To help the family they have a Go Fund Me page Aiden’s new heart tiny but mighty and an account that can be donated to at Gate City Bank’s nationwide under Aiden Bride DeMarris Benefit.

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GoFundme for Aiden DeMarris