SYRACUSE, N.Y. — For the better part of a year, Mitayah Donerlson has been going back and forth from her home in Syracuse to a hospital in Pittsburgh, PA. The trips have been crucial for her son, Kasen, who has been fighting a rare liver disease his entire life. He isn't even one years old yet.
"There was a time in September where they were really afraid that things were going for the worst because of the decline in his liver," said Donerlson.
Her son had been diagnosed with Biliary Atresia early on in 2020, when Kasen was just a few months old. In simple terms, the disease causes blockages in the pathways from the liver to the gallbladder. Kasen had a great deal of trouble gaining weight, had trouble breathing, and suffered from multiple fevers that they could not treat with most over the counter drugs. Doctors initially tried a procedure that would extend his liver, connecting it to Kasen's small intestine - it soon became clear that to increase his chances of survival, more drastic measures were needed. Kasen would need a liver transplant.
"We did an evaluation at Pittsburg to be on a liver transplant list," said Donerlson.
After doing some research, Donerlson decided that the Children's Hospital of Pittsburgh would be the best place for the procedure. They began making visits throughout the summer, with his symptoms and condition fluctuating. About once a month, Kasen found himself in the hospital. It was difficult on Donerlson and the rest of the family, as visitation procedures fluctuated as a result of COVID-19.
"When I hear being admitted or I hear 'admission', I think of my family immediately," said Donerlson, tearing up, "I think about how I can't be with them, I think about how they can't be with me."
The pattern continued until things took a turn for the worst. In late November, Kasen came down with a fever, which quickly lead to a trip to Upstate Hospital's emergency room. It was there than Donerlson was told that her 10 month old child had been diagnosed with COVID-19. Given his health was already in decline, Donerlson was beside herself with the news.
"Immediately I go into tears because I didn't think he was going to make it, I didn't think he was going to suppress the covid and make it past that stage," said Donerlson, "I felt like I failed him as a parent, I felt like I didn't protect him. I felt like I didn't protect my household enough."
Donerlson hadn't been at work in nearly a year - in fact, she says she spent almost all her time at home, being as cautious as possible throughout the pandemic. She has no idea how COVID-19 made it into her home, but the reality was that it had. Donerlson and multiple other family members became ill, but they all ended up pulling through - including Kasen.
"He always seems to wow his doctors," said Donerlson, wiping away tears, "he is a blessing and he is a miracle sent."
Just a few weeks later, the family experienced another miracle. They got a call from Pittsburgh - Kasen had a live liver donor.
"My heart was so overjoyed, that's all I could do was cry and just say thank you, thank you God for giving this opportunity to my child," said Donerlson.
They ended up getting the opportunity to get a liver even sooner as a dead donor option was provided. So, on January 2nd, 2021, Kasen entered the operation room. Nearly a week later, and Donerlson says her son is in good spirits. On January 14th, he'll turn one years old - and Donerslon can't wait to celebrate his birthday.
The family's journey is far from over. Recovery times and procedures mean Kasen may need to stay at the hospital for the next 6 months, meaning Donerlson and likely the rest of the family, including her son and her niece, may have to relocate from Syracuse. She has looked at options for affordable housing like the Ronald McDonald House of Pittsburgh, but COVID-19 restrictions make it difficult to find a place that would allow her entire family to stay.
"The financial hardship of that is very hard," said Donerlson, "I have to juggle both homes and living arrangements here."
Donerlson has set up a GoFundMe page to help with the finances of Kasen's hospital visits and their temporary housing. You can find that information here.