When Oliver was five months old, he developed a urinary tract infection that left him severely ill and hospitalized for six months. His recovery was a huge relief, but left his parents, Haley and Austin, concerned his infection was a sign of something more serious.
They had good reason to worry. Oliver’s brother passed away five years earlier from Chronic Granulomatous Disease, an inherited immunodeficiency disorder that makes it impossible to fight off viruses, bacteria, or fungal infections. Something as simple as exposure to hay, which commonly grows a fungus called Aspergillus can be life-threatening to people with this condition. During that initial hospital visit more in depth testing confirmed that Oliver, too, had CGD.
“We don’t have any prior family history of it. As for having two in a row with it is pretty rare,” Haley said.
Since Oliver’s diagnosis, the DeLatins have been strict about who and what comes into contact with their son’s vulnerable immune system in their hometown in Spanaway, Washington while they decide next steps.
“We have to be on edge every day, and need to be a little bit more cautious and clean with how we navigate life so Oliver doesn’t get sick,” she said. “COVID-19 helped put it into perspective for some people because everybody went into this isolation period. That is how we live all the time. We don’t get together in huge groups, we don’t have birthday parties, we don’t have other young children come over to visit because we’re always at risk of Oliver getting sick.”
Oliver is now two-years-old and has lived at the Seattle Ronald McDonald House for the last month while getting treatment at Seattle Children’s Hospital. He is currently undergoing chemotherapy in preparation for a bone marrow transplant. In other kids with CGD, this has allowed a new immune system to grow and cured their disease.
“Oliver got really really sick already. So we know the weight of not moving forward with treatment,” Haley said. “It helps to be around other families that live in this world. They are also trying to be as clean as possible to keep their kids safe, and they know the impact if somebody’s sick and how that affects other people who might not be able to fight it off.”
The DeLatins are relieved to stay in the Seattle RMHC BMT apartments for three to four months. They won’t have to worry about driving four or five hours a day, Haley will have wifi to work remotely and won’t lose her job, and the apartment is comfortable and safe for Oliver.
“For us RMHC is definitely shelter. It’s a home away from home and you can really come to the Ronald McDonald House with nothing, like no towels, food, or diapers and they will provide everything.”
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