PORTLAND, Ore. (KOIN) — Fourteen-year-old Corbin just started at Franklin High School. But when he was about a year old, doctors discovered he had a rare lung condition and told his family he had 3 to 5 years to live.
The disease, pulmonary hypertension, was discovered “when he went in to get a heart condition fixed,” his mom, Gillian Murr, told KOIN 6 News, “and that there was no cure for it.”
The lung disease constricts the arteries from the lungs to the heart, making the heart pump harder. She said it’s often misdiagnosed as asthma.
“It causes right-heart failure so eventually his heart will fail, which will eventually lead to his death,” said Gillian, an 8th-grade teacher in the Portland Public Schools.
The disease also makes him tire quickly and unable to walk long distances.
The family doesn’t know how long he has. That’s why they’re focused on keeping him happy and giving him as many experiences as possible.
“I try and focus on not thinking about what the future holds for him, as far as his disease and how long he has,” she said. “He loves the beach. We take him to the beach as often as possible, take him out in the community, just give him those experiences while he can and make his life as happy as it can be.”
When Corbin was younger and smaller, it was easier to take him places. He could be carried to spots, but now it’s more difficult. He also has autism and is non-verbal.
The beach, she said, is Corbin’s happy place. “I think the water is very calming to him. He loves the sand. … It just gives me a sense of peace and happiness to see him like that.”
A few years ago, he used a special wheelchair at Outdoor School with big, thick wheels that go easily over sand, dirt and rocks. The family began a GoFundMe page to help finance the chair to make it easier for Corbin to be mobile for as long as he can.
Gillian and her husband, Cesar Leal, have a new 4-month-old baby. Their goal is to all go out to the beach and on trails as much as possible. The special chair would make that easier.
They got a grant from Wheel To Walk and decided to crowdsource the rest.
They hope to have a new chair for Corbin by October “so we can do the pumpkin patch with the baby.” She also knows Corbin would like it.
“It’s everything to me,” Gillian said. “I think as any parent, it’s what we want for our kids is to make their lives happy.”