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Life as a parent with an immunocompromised child during a global pandemic

September 19, 2020

Joseph Mickeliunas is a well-known AP World History and IB History teacher. He is also the parent of a severely immunocompromised child.

“I’ve got a four-year-old son who has two rare diseases,” Mickeliunas said. “He’s got a lot of respiratory issues with his disorder.”

His son Elliott has severe Hemophilia A, a bleeding disorder, and a progressive neurodegenerative disease known as BPAN. Children with BPAN have intellectual disability and delayed development. Elliott cannot produce speech and needs help moving and accomplishing daily tasks.

Mickeliunas believes that if Elliott were to contract COVID-19, it could possibly become a dangerous situation for him. “Potentially, I think it could be deadly with some of the respiratory issues he has,” he said. “If not deadly, it would lead to a pretty lengthy hospital stay until he’s healthy again.”

Both Mickeliunas and his wife were concerned when they first became aware of the virus. They were at the Mayo Clinic seeing their son’s specialists when news of the lockdowns was announced.

Since then, the pandemic has changed routines and social expectations for Mick and his family.

“I think it’s heightened social anxieties for us. I didn’t even fill my gas tank from the end of February from the end of June. I had to ease my way back into [social situations]. We’ve learned more about just how to care for our son,” he explained. The family now has groceries delivered and they do not go out to restaurants.

During the first wave, his main concerns were keeping his family as isolated as possible from other people. But he notes that after the peak of the first wave, his concerns have started to include the actions other people are not taking.

“I see a lot of people just attempting to return to normal. They are tired of quarantine and isolation. That is tough, I don’t disregard those feelings, but I think people are to the point where they are not taking enough precautions to stop the spread.”

Mickeliunas says he understands the desire for normalcy. He too wants to see students again, and even mentions his 9-year-old daughter’s struggles not being able to see friends, because of her brother’s fragile situation. However, he recognizes that everyone needs to remain cautious.

“I don’t feel that we’re at a point where that things should be back to normal.”

Heis also skeptical about returning to school Oct. 19. There is a fear he may contract the virus and bring it home to his son.

“I think there’s a fear that I could spread it easily to [my son],” he said. “I am concerned for sure. I don’t know if we have the proper things in place [to stay healthy]. I’m doing my best to keep my room extremely clean. Our hope is that everyone understands the risks and the safety protocols.”

The teacher also mentions that it can be frustrating to hear of people who refuse to wear a mask or acknowledge the pandemic. “People…have lost family members and people have been sick. I think it’s almost sad that facts and science can be dismissed so easily.”

Mickeliunas asks healthy people during this time to be considerate of those who are immunocompromised.

“Put yourself in that position, if someone you loved so dearly that their fragile life could be compromised by going to a party, socializing, or not following precautions. Your actions can truly affect people. It’s not forever, we should be able to make small sacrifices to be able to help the well-being of everybody.”

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