Doctors told baby Eli Thompson’s mother that he is 1 in 197 million. Born on March 4, 2015, Eli was seemingly healthy after he was born, but when his mom Brandi McGlathery, held him in her arms for the first time she noticed something was missing. She told AL.com:
“I pulled back and said, ‘Something’s wrong!’ And the doctor said, ‘No, he’s perfectly fine.’ Then I shouted, ‘He doesn’t have a nose!’”
It turns out Eli was born with an extremely rare condition called congenital arhinia – there are only 43 reported cases worldwide. Besides not having an external nose, Eli also doesn’t have nasal passages or sinus cavities. He had a tracheotomy five days after his birth, which helped his breathing tremendously. Otherwise, he is doing remarkably well and is healthy.
Brandi immediately began to search for information about his condition and right away connected with a mother in Ireland, whose 2-year-old daughter, Tessa, also has arhinia. Brandi also found several other young people who are living with the condition. Hearing their stories and advice has helped put her mind at ease.
Although Eli will need to visit craniofacial specialists over the next 10 or so years, Eli is breathing and doing well. Eli’s family set up a GoFundMe page. Brandi writes:
“I’m not the type of person that ask for help so this is very hard for me to do… I would be so grateful for anything anyone could spare, but if you cannot afford to help with money I will be just as appreciative for prayers for my sweet Eli. He has a long road a head of him & we need all the support we can get.”
Eli is nearing 7 months old now and his family has also met with Tessa, who will be the first child to undergo surgery in June 2015 that will give her a brand new nose. Eli has been approved for the same surgery.
Eli already has the love and support of his entire family, who all think he is “perfect”. “We’re going to do our best to make sure he’s happy,” Brandi said. “The rest of him is so cute, sometimes you don’t realize he doesn’t have a nose.”