Baby Eli, Born Without Nose, Meets Tessa, Toddler With Same Condition

After her son Eli was born without a nose last March, his mom Brandi McGlathery left the Mobile, Alabama hospital with more questions than answers. Eli was diagnosed with congenital arhinia, a super rare condition affecting only one in 197 million people. He can breathe on his own through his mouth, but only has a nasal bone, no tissue.

A few days after Eli’s birth, his grandfather found a Facebook page for Tessa Evans, a 2-year-old girl in Ireland who was born with the same condition. McGlathery reached out to Tessa’s mom, Gráinne Evans, who became a valuable resource to Eli’s family. Evans has made it her mission to connect with as many people with arhinia as she can, to better understand her daughter’s condition.

“Just about everything we learned in the early days was from Gráinne,” Sharon Thompson, Eli’s grandmother, tells  Al.com. “Her goal was that she wanted the next child born with this condition to find the group – and we did.”

But with 4,000 miles between them, they didn’t think they’d ever be able to meet in person. Until they learned that serendipitously, their families had plans to be in Atlanta at the same time. Tessa’s father won a trip from Coca-Cola for what would be the family’s first US visit, the same weekend Eli’s grandparents planned on visiting relatives. Knowing the opportunity for Tessa and Eli to meet could be a once-in-a-lifetime chance, they brought him to Atlanta.

Although Tessa and Eli are young, they were immediately drawn to each other and both expressed fascination with finally meeting someone who looks like them. Tessa touched Eli where his nose should be, before pointing to her own face in the same place. Her mom took to Facebook to share the story of these two unique babies meeting for the first time.

“Two and a half years ago we were struggling to come to terms with Tessa’s diagnosis. A condition so rare we were told there were only a few in the world. We had no-one to turn to and in the absence of knowledge or hope all you have is fear and uncertainty … in the following months I worked hard to connect with other families sharing the same journey and in finding them the feelings of joy and relief were almost overwhelming,” she writes.

“To get to introduce Tessa to Eli was like a dream come true and it meant the world to us to sit and talk with his family. Tessa was totally taken with Eli and hugged him and stroked his head. Watching Eli gaze up at her was too precious for words. For them it was just meeting a new friend - for us it was so much more!!”

Since Eli has a working airway in his mouth, there’s no immediate need to create a prosthetic nose just for appearance-sake.

“Think of the medical advancements that will take place in the coming years,” Thompson says. “We don’t want to do anything that will prevent us from having an option 12 to 15 years from now.”

Otherwise, Eli’s a typical 7-month-old, weighing nearly 14 pounds and sleeping well. But he’s also a local celebrity, of sorts. “Just about everywhere we go, someone recognizes him,” Thompson says. “It’s wonderful to have that kind of support. You can never have enough support when you’re raising a child.”