![]() He had norovirus he couldn’t nurse and had to be on a bottle, but even then, he wouldn’t latch on,” Shorty said. HT was in the Phoenix hospital for about a month. “They told us the best hospital for SCID was UCSF, but HT needed to be a little older before it was safe to airlift him.” “When I went to Phoenix to visit HT, I had to scrub my hands up to my arms and wear a gown and mask,” Shorty said. The standard treatment for Artemis-SCID is a bone marrow transplant from a donor, ideally a matched sibling.īack in Phoenix, doctors tested the blood of HT’s brother and parents to see if they were a match and awaited the results, which would take several weeks. They are frequently plagued with a poor quality of life due to repeated and persistent infections, chronic diarrhea, and failure to gain weight. HT was found to have a rare mutation in the DCLRE1C or Artemis gene, meaning he had Artemis-SCID - the most serious of primary immunodeficiencies, otherwise known as Bubble Boy or Bubble Baby Disease (females can have it too).Ĭhildren with Artemis-SCID lack a functioning immune system and are highly susceptible to infections, which often accumulate and become severe, even deadly. It would be years before it felt like the world started up again. “When you hear something like this about your child, your world kind of stops.” “The pediatrician told us it was very serious and HT needed to be kept in isolation as a precaution,” said Shorty. Doctors at Tuba City Regional Hospital had found something abnormal in HT’s blood tests, and he needed to be airlifted to Phoenix Children’s Hospital for more tests. Within days, however, the family’s exuberance gave way to fear. “He was a beautiful baby, and we were all excited that he came into the world,” said Laverna Shorty, his paternal grandmother. ![]() ![]() With his shock of black hair and shining black eyes, Hataalii quickly won over everyone he met. When Hataalii Tiisyatonii Begay was born on April 7, 2018, his family members rejoiced in the hospital in Tuba City, Ariz., and on the remote Navajo Nation reservation where they lived. ![]()
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