When Brandi McGlathery held her newborn son for the first time, she saw a perfect baby, "..he had five fingers on each hand and five toes on his tiny feet, nothing was missing, except for his nose."
Although he struggled a bit, Eli took to breathing through his month naturally even while breastfeeding.
Eli was born on March 4, 2015 and was immediately taken to USA Children's and Women's Hospital in Mobile, Alabama, so doctors could give him a tracheotomy to help him eat without struggling for breath.
McGlathery says everyday she and her boyfriend, Eli's dad, Troy Thompson are sure to clean his tracheotomy and keep it infection free. They're hoping in the future he can get reconstruction surgery to build a nose.
Tessa Evans is now-18 months-old, and her parents are sharing their experiences with congenital arhinia due to medical misinformation that says children born with it have poor mental and physical abilities. "That statement is false on so many levels," the Evans say.
While insurance pays for some medical costs, there are question marks about the rare disease that procedures like reconstruction surgery for Eli's nose may not be covered. McGlathery says, "..they don't know what treatments work and they are skeptical of reconstruction surgery because it's cosmetic."
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