It's not unusual for a toddler to get a cold. But when Olivia continued to get fevers and cold-like symptoms on and off for several months, her mom and dad, Natalie and Greg, knew something wasn't right.
The fact that Olivia was born with Dandy-Walker malformation, a congenital brain abnormality affecting the cerebellum, added another piece to the puzzle. Her little body was spiraling with symptoms of one issue causing flareups of another issue.
Finally, at the end of 2019, after seven months, Greg and Natalie had an answer. A full genetic workup revealed Olivia had an extremely rare disease: Heme oxygenase-1 deficiency.
"Once we received the diagnosis, we were relieved to finally have a treatment plan," said Greg. "She is one of only a few people in the United States to have this disease."
Since Olivia's symptoms were similar to those of another disease, a bone marrow transplant was already being considered as a possible treatment—now it was her only chance of a cure.
It was now the beginning of 2020 and COVID-19 restrictions in the United States were making the search for Olivia's marrow donor more challenging. "She had four very good matches," Greg shared. "But the donors in the United States weren't able to move forward due to covid—luckily a registry member in Europe was able to donate right away."
With the transplant center an hour away from home, Greg lived with Olivia during the week and Natalie took over on weekends. "Fortunately, I was able to take a leave of absence from work," Greg said.
The first few weeks of post-transplant recovery were very difficult and Olivia had to stay in intensive care, but fortunately, her condition quickly began to improve. "Once we got past the first few weeks, her healing just clicked," said Greg. "We returned to the bone marrow unit and she was smiling and sitting up."
In order for Olivia to be able to continue healing before going home, Olivia's family spent a month at a hotel near the transplant center. Greg was thankful to receive a patient assistance grant from Be The Match that covered the extended hotel stay. "The Be The Match grant allowed us to forego the added lodging expense at a time when I wasn't working," he said.
Today Olivia continues her healing journey. According to Greg, "She went from being a very complicated patient to being a boring patient—which has been a miracle."
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