Arhinia

Though she's only 2 1/2 years old, Tessa Evans recognized right away that the baby - with his wide eyes and toothless grin - was unlike anyone else she'd ever seen before, except in the mirror. Fascinated, she reached out to 7-month-old Eli Thompson and touched him where his nose should be. Then she touched her own face in the same spot. It was the first time the toddler had seen someone else who looked like herself.

Both children were born with arhinia, an extremely rare facial anomaly.

When Tessa was born in Ireland without a nose, doctors were perplexed - and understandably so, as the condition affects only one in 197 million people. Tessa's mom, Grainne Evans (pronounced "Grahn-ya"), felt alone and hopeless, and so she began reaching out via Facebook to others with ahrinia. She created a closed group for the approximately 50 others worldwide with the condition.

Two years later, when Eli was born at South Baldwin Hospital in Foley and immediately transported to USA Children's and Women's Hospital in Mobile, his mother, Brandi McGlathery, was similarly frustrated. But within days, Eli's grandfather, Bobby Thompson, had found Tessa's Facebook page, "Tessa; Born Extraordinary," and, through that, they found Tessa's mother, Grainne.

Soon, Grainne became a mentor to Brandi and an invaluable source of information for Eli's family, despite the fact that she lives more than 4,000 miles away, on the other side of the Atlantic Ocean. "Just about everything we learned in the early days was from Grainne," said Sharon Thompson, Eli's grandmother. "Her goal was that she wanted the next child born with this condition to find the group - and we did."

During the first weekend of October, Eli and Tessa met in Atlanta. Eli's grandparents had already planned a trip from their home in Silverhill to visit relatives there. Unbeknownst to them, Tessa's father, Nathan Evans, a bartender at Mary's Bar in Magherafelt, Ireland, had won a trip to Atlanta in a Coca-Cola Signature Serve contest.

When Brandi learned that the Evanses were going to be in Atlanta the same weekend as the Thompsons, she helped arrange their meeting even though she wasn't able to go to on the weekend trip because of her work schedule.

Sharon knew just the place: Chama Gaucha Brazilian Steakhouse. The two families met there and had a long, leisurely dinner. Before long, Tessa had fallen asleep, and then Eli followed suit - but not before having his soft, blond head stroked over and over by his new friend. "Tessa bonded with Eli immediately," Sharon said. "She made the connection between them."

The trip to Atlanta marked the Evanses' first time visiting the United States as a family, and it was also the first time Tessa has been on an "aeroplane," as Grainne called it, for a non-hospital-related journey, she said.

Under the treatment of a doctor in London, Tessa has undergone surgery using 3D printing technology to place a tiny prosthesis under the skin to form a nose-like bump. Over the years, she will have more surgeries with increasingly larger implants as the rest of her grows.

"They're a wonderful family," said Sharon of the Evanses. "Their whole approach with Tessa has given us such comfort."

For example, the Thompsons watched Tessa remove her own, hot pink passy muir ("speaking valve") that covers her trach so that she could babble on like any other toddler. "If she takes the trach out, she breathes out of her mouth, so why panic?" Sharon said.

Unlike other children who have tracheotomies, Eli and Tessa have a working airway, through their mouths. For them, the trach is there so they can eat without having to breathe through their mouths at the same time…

"Eli loves everybody," Sharon said. "If you greet him with a smile, he beams at you. He's such a happy baby."

 "When you're looking at him, you're looking at a gift from God," said Julie. "Any sadness in your heart just melts away. He makes you realize what's important."

"Everyone gets that feeling from him," said Sharon. "It's amazing."

http://www.al.com/news/mobile/index.ssf/2015/10/when_eli_the_baby_without_a_no.html

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An Alabama boy who was born without a nose and had gained a legion of online supporters with his smiles and fist bumps died on Saturday (6/3/17), three months after celebrating his second birthday.

Jeremy Finch on Sunday

We lost our little buddy last night. I'll never be able to make sense of why this happened, and this will hurt deeply for a long time. But I'm so blessed to have had this beautiful boy in my life! He finished his race a lot earlier than we would have liked, but it was God's time to bring him back home. I'll forever look forward to seeing him at the gates of Heaven waiting on me to give me another one of his famous fist bumps! I love you little man. Rest in peace with my Father.

http://www.foxnews.com/health/2017/06/05/miracle-baby-born-without-nose-dies-at-age-2-family-says.html