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When COVID-19 started to become a concern in 2020, I wasn’t sure how it could potentially affect my son, who has with Alagille syndrome (ALGS). Not only were we already dealing with ALGS, but we were also just a few months post-liver transplant, which caused another world of worry on top of the ALGS. 

At first, we tried to isolate the fear of how it could impact his immune system. There was still so much unknown surrounding COVID-19 that we were afraid he could get very sick. Then, we did all the things that were recommended and followed along with what everyone else was doing: sanitizing groceries, wearing masks, washing our hands often, staying away from crowds, and more. 

We made it almost a year without testing positive for COVID-19, but then in December 2020, it finally got us. My husband and I were out with 3 friends for dinner. During dinner, one of our friends received a phone call that someone he was with earlier in the week had tested positive. It took a few days for him to obtain a COVID-19 test and by that point, he had started to feel sick. When we received the news, we were very afraid. We weren’t sure if we should send our son to my in-law’s house to wait until we knew if we were positive or if at that point he was already exposed, and he should just stay home. 

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Our entire family ended up with COVID-19. My son had a low-grade fever for about 2 days leading up to us testing positive. Other than the low-grade fever, however, he had no other symptoms of COVID-19. He continued with life like nothing was wrong. It was such a relief for us to see that he handled the virus so well and that he was handling it better than some of the others in my family who were not immune compromised. My other 2 kids with ALGS handled the virus well, too. 

Read more about comorbidities in ALGS

At that point, it felt good knowing that his body managed the virus well, so while we still kept our precautions, we started to venture out a little more to try to get our lives back to as close to normal as possible. We started going out to restaurants and museums with the kids and trying to do the things we always did before. We saw no long-term COVID-19 effects that he was experiencing from his time with the virus.

Even though he handled his COVID-19 journey well, we don’t know what the future holds, or if he gets COVID-19 again, if he will handle it the same or potentially worse. There aren’t enough studies to provide this kind of information. I am thankful that this time, he came out with flying colors.