Eli Thompson — the boy who was born in 2015 without a nose due to a rare condition — has died, at the age of 2, in his home state of Alabama.
“We lost our little buddy last night,” Eli’s dad, Jeremy Finch of Mobile, Ala., posted on Facebook Sunday, along with the link to an article about the boy’s death in AL.com. “I’ll never be able to make sense of why this happened, and this will hurt deeply for a long time.”
He continued, “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.”
Eli was “very, very bright and happy, always smiling and giving everybody fist bumps,” Finch told the website, adding that he communicated by using baby sign language, and that he’d started speech therapy at home with a speaking valve. “His favorite sign was ‘cookie,’” he said. “He touched a lot of people’s lives. A lot of people cared about him.”
Eli received a tracheotomy at just 5 days old after being born with congenital arhinia — a condition so rare it reportedly affects only one in nearly 200 million births.
According to the National Organization for Rare Disorders, “The complete absence of the nose from birth (congenital arhinia) was first described in the French literature in the 1800’s. A handful of additional patients with congenital arhinia, some with and some without eye defects, were reported in the early to mid-1900’s.”
While Finch did not specify what led to his son’s death, being born with bosma arhinia microphthalmia (the full name of the syndrome) can cause trouble with breathing and eating. Eli was born prematurely without any nasal passages or sinus cavities and had a tracheotomy. His soft palate also did not develop fully.
Caring for a baby with a compromised airway takes a lot of work, Today noted in a story about Eli’s birth. “Mom and dad need to suction the tracheotomy at least two times a day and clean around it. They also have to change the ties that hold the tracheotomy in place because the spit-up and milk that catches on them can irritate the skin and lead to infection,” the story explained. “When he sleeps, he wears a heart monitor, which sounds an alarm when Eli’s heart rate increases from crying.”
Eli gained many supporters around the world when he was born, including after Facebook had removed an image of Eli in error, dubbing it “shocking,” but reversing its decision after mom Brandi McGlathery had spoken out.
Just recently, on May 31, McGlathery posted a photo of herself with Eli to Facebook. “It’s been a LONG road, but we have come a LONG way, my baby. I made mistakes, I had short comings, & I still have days where I get so overwhelmed with you, your brother & sister that I wanna curl up and cry, but I have found myself in you,” she wrote. “You made me grow up, & you taught me what unconditional love is. You will forever be the little boy that busted my heart wide open. Thank you for rescuing me, & blessing me with what I never knew I needed.”