Born without a nose

• Eli was born with congenital arhinia, meaning he was born without a nose.

• His family updated thousands of well-wishers on a Facebook page, Eli’s Story.

• He died a few months after his second birthday, though the cause is unknown.

• Eli’s family is raising money online to pay for his funeral expenses.

Eli Thompson, a baby born without a nose, and whose story captivated social media, died unexpectedly over the weekend, his father confirmed on social media. Little Eli was born with a condition called congenital arhinia; the condition is incredibly rare, with only 41 cases around the world, Today.com reports. While his mother, Brandi McGlathery, was pregnant, doctors didn’t notice anything wrong with his development, and he even had a nasal bone.

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At first, doctors thought that once Eli got old enough, they could construct nasal passages through surgery, or at least give him a cosmetic nose that didn’t function. He also might have needed hormone therapy since his pituitary gland wasn’t working. At five days old, he got a tracheotomy, and was eventually sent home with his family. His family posed updates on a Facebook page, Eli’s Story, which has since been taken down. According to People, he was known as a “miracle baby.”

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Eli turned two on March 4, and died Saturday night. It’s not immediately clear what caused his death. “We lost our little buddy last night,” dad Jeremy Finch wrote on Facebook. “He finished his race a lot earlier than we would have liked, but it was God’s time to bring him back home.”

His family is remembering him for the positive influence he left on the world around him. Before he died, he was learning baby sign language and starting speech therapy, AL.com reports and his favorite word was “cookie.” He was “very, very bright and happy, always smiling and giving everybody fist bumps,” Finch told the site.

Eli’s family has set up a GoFundMe page to pay for his funeral and burial, and excess funds will be given to charity in his name. So far, the campaign has raised $18,500, surpassing its $12,000 goal in less than 24 hours.

Alabama Boy Born Without a Nose, Known as ‘Miracle Baby,’ Dies at Age 2

Justin Finch/Facebook

An Alabama boy, known as the “Miracle Baby,” died on Saturday due to his rare condition. He was 2.

Eli Thompson was born in March 2015 with an extremely rare condition known as congenital arhinia: he has no external nose, nasal cavity or olfactory system. He was just one of about 40 people in the world with the condition.

Eli’s father, Jeremy Finch, confirmed the sad news Sunday on Facebook.

Image zoom Justin Finch/Facebook

“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!” Finch wrote.

“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,” he concluded.

Finch created a GoFundMe page to raise funds for Eli’s funeral.

“I’m a proud man and I don’t like to ask for anything, but my baby’s funeral expenses are more than we can bear at this time,” Finch wrote, adding, “If we raise more than we need, the excess will be given to charity in his name.”

The GoFundMe has well exceeded its initial goal of $12,000 with over $16,000 (at time this was published).

In April 2015, Eli’s mother, Brandi McGlathery, shared her son’s health condition with the world, telling Today: “He’s just like any other baby. He just doesn’t have a nose.”

When Eli was born, he was mostly healthy otherwise, and immediately underwent a tracheotomy to allow him to breathe while feeding, which meant his parents had to clean around the incision at least twice a day.

Many of Eli’s family and friends shared tributes on Facebook with photos of the young child.

Baby boy born without a nose dies at 2 years old

  • 2-year-old Eli Thompson – the boy who was born in 2015 without a nose due to a rare condition – died Friday, June 2, 2017, according to his father Jeremy Finch.
    Source: GoFundMe

    2-year-old Eli Thompson – the boy who was born in 2015 without a nose due to a rare condition – died Friday, June 2, 2017, according to his father Jeremy Finch.
    Source: GoFundMe

    Photo: GoFundMe

Photo: GoFundMe Image 1 of / 15

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2-year-old Eli Thompson – the boy who was born in 2015 without a nose due to a rare condition – died Friday, June 2, 2017, according to his father Jeremy Finch.
Source: GoFundMe

2-year-old Eli Thompson – the boy who was born in 2015 without a nose due to a rare condition – died Friday, June 2, 2017, according to his father Jeremy Finch.
Source: GoFundMe

Photo: GoFundMe Baby boy born without a nose dies at 2 years old 1 / 15 Back to Gallery

On March 4, 2015, Timothy Eli Thompson was born without a nose due to a condition called congenital complete arhinia. Sadly, Thompson’s father, Jeremy Finch, reports the adorable baby boy died on June 2, 2017.

On June 3, Finch, of Mobile, Alabama, announced his 2-year-old son’s death in a moving Facebook post, but did not share a cause of death.

“We lost our little buddy last night,” Finch wrote in the post. “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.”

He’s just about got his Passy Muir Valve figured out

Posted by Jeremy Finch on Sunday, December 11, 2016

Chron.com reached out to Finch, but we’ve yet to hear back.

Finch’s wife, Anamarie Finch, who is Thompson’s stepmother, also posted a tribute to the baby boy saying, “I miss you so much bubba! You will forever have a piece of my heart. I love you precious boy.”

According to the National Organization for Rare Disorders, congenital complete arhinia is defined as, “The complete absence of the nose from birth.” It’s estimated this condition only affects one in nearly 200 million births.

Since the announcement of Thompson’s death, the family in Mobile, Alabama, has set up a GoFundMe account. In under 24 hours, over 450 people have raised over $19,360 dollars.

The fundraising goal to cover the costs of Thompson’s funeral expenses was just $12,000, so the extra money is going toward charities that helped Thompson before his death, including The Ronald McDonald House and The Make a Wish Foundation, according to the GoFundMe account.

Eli Thompson has died at the age of two

A toddler who was born with no nose has died at the age of just two years old.

Eli Thompson was pronounced dead in Mobile, Alabama, on Saturday night, three months after celebrating his second birthday.

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He was just one of 37 babies in the world with the condition when he was born on March 4, 2015.

He was premature and did not have any nasal passages or sinus cavities, a condition known as arhinia, and was given a trachaotomy at five days old.

His father Jeremy Finch told Al.com: he was ‘very, very bright and happy, always smiling and giving everybody fist bumps.’

Eli communicated through sign language but his parents said that he was a high-spirited child and got on with other children.

Mr Finch added: ‘He touched a lot of people’s lives. A lot of people cared about him.’

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At seven months old he met Tessa, another young girl in Ireland who had the same condition as him.

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Her mother Grainne Evans said afterwards: 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.’

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Jeremy Finch told informed his followers on Facebook of Eli’s death.

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, three months after celebrating his second birthday.

“We lost our little buddy last night,” Jeremy Finch, Eli Thompson’s father, posted on Facebook. “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!”

Eli was born without a nasal passage or sinus cavities and received a tracheotomy at just 5 days old, AL.com reported. He was diagnosed with arhinia, a congenital facial condition that has only been recorded 30 times, according to the National Institute of Health.

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“He touched a lot of people’s lives,” Finch told AL.com. “A lot of people cared about him.”

Finch told the news outlet that Eli communicated using baby sign language and had started speech therapy at home. At the time of his 2015 birth, local news outlets had dubbed Eli the “Miracle Baby” and supporters were regularly updated on his developments through a now-defunct “Eli’s Story” Facebook page.

“He finished his race a lot earlier than we would have liked, but it was God’s time to bring him back home,” Finch posted on Facebook. “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.”

Finch’s post received nearly 1,000 likes and over 130 shares since being posted on Sunday. The family is accepting donations to help cover funeral costs.

Cassidy Hooper was born with a congenital birth defect (Picture: WBTV)

Cassidy Hooper was born with a very rare congenital disorder that meant her eyes and nose never developed.

But she never wanted that to hold her back. Her mantra throughout life has been ‘I don’t need it to be easy, I just need possible.’

And last week, she graduated from college with a degree in Associate of Arts.

Now 22, Cassidy, from Charlotte, North Carolina, U.S., went to a school for blind children and had a pretty hectic life full of activities.

She was on her high school’s track team, helped out as an usher at concerts and worked with charities.

At the age of 17, she had the last of 12 surgeries to create a new nose for her, using bones from her ribs.

After her surgeries, she went on to study at Central Piedmont Community College.

On Thursday, she got to walk across the stage in her gown and cap to collect her degree.

Cassidy has now graduated from college (Picture: WBTV)

She told WBTV: ‘I got out there and I realized, wait a minute, this is actually happening?!

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‘Am I dreaming or am I awake?! It just shocked me at how fast the time went.’

Now Cassidy is looking towards a career in radio broadcasting, something she has wanted to do for years, but she is also considering working in worship ministry.

This summer she’s planning to work with her high school in Raleigh.

Go Cassidy!

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Sept. 13, 2013— — Cassidy Hooper was born with no eyes and no nose, but on Sept. 18 — a big day for the North Carolina 17-year-old — she undergoes the final surgery that will give her a nose.

Cassidy, a senior at Governor Morehead School, told ABCNews.com earlier this year that she is excited that for the first time, she will be able to smell and breathe through her nose.

“I’ll have a real nose like everyone else’s,” she said.

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Since 2007, when she was 11, Cassidy has gone through a series of skin graft and facial reconstruction surgeries at Levine Children’s Hospital in Charlotte. In three final surgeries done over two to three weeks, doctors will stretch skin flaps over a bone or cartilage graft from another part of her body.

Nothing has ever stood in the way of Cassidy’s optimism and ambition. “Things always may be hard,” she said. “But here’s what I think: I don’t need easy, I just need possible.”

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No one knows why Cassidy was born without eyes and a nose, a rare birth defect that likely occurred during the first two weeks of gestation.

“Her heart and brain are normal,” said her mother, Susan Hooper, 43, who’s a kindergarten teacher. “Nothing else is going on with her.” Hooper likened the series of surgeries to building the foundation of a house.

The surgery will be performed by Dr. David C. Matthews, a pediatric surgeon. So far, Cassidy has undergone four to five “expander” operations to break through her gums. Then, she had surgery to create nasal passages and break her jaw to set it properly.

That was followed by a skin graft to help keep her nasal hole open, because it kept closing. She underwent another major surgery on her jaw so that the upper jaw could move forward and be more in line with her lower jaw. Three more surgeries were done this summer to prepare the area for her nose to be attached.

As a little girl, Cassidy had prosthetics for eyes, but at $5,000 apiece, the family could not afford to replace the custom-made eyes when she outgrew them.

“Insurance didn’t pay one cent,” said her mother. “We had already started the process to do her nose, moving her eyes closer together and having her skull reshaped. We were not going to pay for it then have to pay again.”

She said once Cassidy’s nasal surgery was completed, they would buy new prosthetic eyes.

Since the fifth grade, Cassidy has gone to Governor Morehead, a residential K-12 school for the blind, where no challenge was too big for her. She’s on the track team and qualified last year for a scholarship to the Charlotte Curling Club.

The first week of school, Cassidy turned to her mother and said, “Mom, everyone here is blind, so I’m normal.”

Though she received some stares and taunts as a young child, today her social life is busy.

“Honestly, there’s been a bit of teasing, but not more than any other child on a regular day,” said her mother.

If Hooper is with her daughter and notices stares, she’ll often say pre-emptively, “Do you have a question — she looks kind of different. And she’ll answer the question herself.”

“When kids realize it’s just an outward thing, and she likes everything else other teenagers like, they are more accepting,” she said.

Cassidy is a strong student, on track to go to college and study broadcast journalism.

In track and field events, Cassidy runs the 75-yard dash with the help of a cable to direct her. “I hold on to this rope and it slides across the cable like a zip line,” she said. “I just run and it helps me.”

When she does curling — the Canadian Olympic sport on ice — she relies on an assistant to serve as her eyes.

“To me, if it’s something hard, I get through it,” said Cassidy.

In 2011, Cassidy protested a law that required the Department of Public Instruction to close one of three schools that serve the blind and deaf in North Carolina, appearing at a public hearing in Raleigh. Her school was spared.

She was also recently offered her first job at the Library for the Blind, according to ABC’s WBTV, which has followed Cassidy’s story for six years. She’ll take the Amtrak from Charlotte to Raleigh every week.

Cassidy has high hopes for her future, despite her physical challenges.

Her advice to others with disabilities: “If you have challenges, be positive about it.”

Eli Thompson, who attracted worldwide media attention after he was born without a nose, died Saturday evening, according to his father, Jeremy Finch.

Eli had turned two years old on March 4.

He was pronounced dead at around 10:40 p.m. at Springhill Medical Center in Mobile, Finch said.

Eli was “very, very bright and happy, always smiling and giving everybody fist bumps,” Finch said in a phone interview Sunday morning.

He used baby sign language, and Finch was starting to do speech therapy at home with a speaking valve, he said. “His favorite sign was ‘cookie,'” he said. The first thing he did every morning was to ask for a cookie, and he recently received the “Cookie Monster Award” from his daycare.

“He touched a lot of people’s lives,” Finch said, with tears in his voice. “A lot of people cared about him.”

Eli was born at South Baldwin Hospital in Foley, then immediately transported to USA Children’s and Women’s Hospital in Mobile. He received a tracheotomy at 5 days old.

Through a no-longer-extant Facebook page called Eli’s Story, thousands of people followed the tale of the baby born with arhinia, a rare facial anomaly said to affect only one in 197 million births.

When he was 7 months old, Eli met another child, Tessa Evans of Ireland, then 2 1/2 years old, who also had arhinia.

“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’s mother, Grainne Evans, wrote after the meeting. “Tessa was totally taken with Eli and hugged him and stroked his head. Watching Eli gaze up at her was too precious for words.”

Finch said the family is still finalizing arrangements for Eli’s funeral service, which will be held at Fountain of Life Church in Saraland.

(GoFundMe)

Eli Thompson, an Alabama boy who survived for two years without a nose, has died. His father, Jeremy Finch, announced the sad news on June 4, exactly two months after he celebrated his second birthday. But his story still touched thousands, many of whom donated to a GoFundMe page to help his parents pay for his medical bills and funeral.

“He touched a lot of people’s lives,” Finch told AL.com on June 4. “A lot of people cared about him.”

Here’s what you need to know about Eli, who was dubbed a “miracle baby” after his birth, and his rare condition.

1. Eli Was Born With Arhinia, Which Only Effects 1 in 197 Million Births

Baby born without a noseAN ALABAMA BABY WITH AN EXTREMELY RARE BIRTH DEFECT HAS CAPTURED THE ATTENTION AND AFFECTION OF THE ONLINE COMMUNITY. LITTLE ELI IS FINALLY HOME AFTER SPENDING A MONTH IN THE HOSPITAL. ◂ San Diego’s News Source – 10News, KGTV, delivers the latest breaking news, weather forecasts, video on demand and live video streaming straight to you, keeping you in touch anywhere, any time. It’s the best way to keep informed and connected to your community wherever and whenever you want backed by the resources of 10News – San Diego, California. For more download the 10News mobile app: iPhone: http://bit.ly/iOS-kgtv Android: http://bit.ly/kgtv-android 2015-04-03T00:17:48.000Z

Eli was born with a rare condition called arhinia, with his nose missing. The cause of the condition remains unknown, but it’s estimated that just one in 197 million babies are born with the condition.

Despite the condition and needing to breathe through his mouth, Eli was perfectly healthy, Brandi McGlathery, his mother, told AL.com.

“He just doesn’t have a nose. He has a few hormone deficiencies, but other than that he’s healthy,” Brandi said. She said she was worried about the day kids made fun of him at school, but she said she didn’t want anyone to feel bad for him.

“We don’t want anyone to pity him. We never want anyone to say they feel sorry for him. If other people express that, he’ll feel that way about himself,” Brandi told Al.com.

Right after Eli was born, he was rushed to USA Children’s and Women’s Hospital in Mobile, Five days after his birth, he was given a tracheotomy.

2. When He Was 7 Months Old, Eli Met A Girl From Ireland Who Was Born Without a Nose

Baby Eli meets girl with same conditionDuring a meeting in Atlanta, the family of Baby Eli, who was born with a rare condition that left him without a nose, got a chance to meet the family of a girl with the same condition. 2015-10-15T17:44:04.000Z

In October 2015, Eli met Tessa Evans, a two and a half-year-old girl from Ireland who was born with Ahrinia as well. As AL.com notes, Tessa’s mom, Grianne Evans, connected with Brandi over Facebook after Eli’s grandfather found Tessa’s Facebook page. After conversations online, Eli and Tessa met in Atlanta because Tessa’s father just coincidentally won a trip to Atlanta in a Coca-Cola contest.

After learning about Eli’s death, Grianne Evans wrote a tribute to Tess’ friend.

“Our family feels his loss deeply and send his family all the love we have, strength for the future and prayers for their precious baby. I will cherish the memory of getting to hold him in my arms. I was so sure I’d get the chance again,” Grianne wrote. “Sleep tight Eli.”

Tessa also became an international sensation. Even The New York Daily News published a story on her.

3. Eli’s Dad Didn’t Reveal His Cause of Death

(GoFundMe)

Eli’s father, Jeremy Finch, announced the devastating news of Eli’s death on Facebook on June 4. He did not reveal the cause of death. According to AL.com, Eli died at 10:40 p.m. on June 3 at Springhill Medical Center in Mobile.

Jeremy wrote:

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.

During an interview with AL.com, Jeremy said his son was “very, very bright and happy, always smiling and giving everybody fist bumps.”

Eli had to use baby sign language to communicate and was just starting speech therapy at home. “His favorite sign was ‘cookie,’” Jeremy recalled, since Eli would ask for one every day.

4. A GoFundMe Account Has Raised Over $19,000 for Eli’s Family to Pay Medical Expenses & Funeral Costs

(GoFundMe)

Shortly after Eli’s death, Jeremy launched a GoFundMe account with a modest goal of $12,000 to pay for medical expenses and Eli’s funeral. As of this writing, the fund has raised $19,770.

All money raised past the goal will be donated to national and local charities, Eli’s father wrote.

“We’ve surpassed our goal for Eli’s services. We thank you all from the bottom of our heart,” Jeremy wrote. “Please know that if you wish to continue giving, you will be contributing to local and national charities in Eli’s honor. Thank you so much for your overwhelming support in this time of sorrow. May God bless you all for your kindness.”

5. Cassidy Hooper, Born Without Eyes & a Nose, Is Now 20 Years Old

Cassidy Hooper – Teenage girl born without nose and eyeshttp://www.yenghana.com Cassidy Harper. A North Carolina teen born with a rare condition that left her without a nose or eyes is preparing for her final operation which will give her a real nose. Cassidy Hooper, 16, will undergo three surgeries at Levine Children’s Hospital in Charlotte over the course of two weeks that will create a nose from cartilage and bone taken from her skull. Video by wbtv For more, vist http://www.yenghana.com 2013-03-06T21:50:34.000Z

Cassidy Hooper is another inspiring story. She was born without a nose and eyes. The North Carolina-born Cassidy is now 20-years-old.

When she was 17, Cassidy was profiled by ABC News. At the time, she was undergoing her final surgery to give her a nose. She started having skin graft surgeries at age 11 at Levine Children’s Hospital in Charlotte, but she never let these challenges stop her.

“Things always may be hard,” she told ABC News. “But here’s what I think: I don’t need easy, I just need possible.”

In July 2015, WBTV reported that Cassidy’s story inspired a Swiss mother, whose son Ben was born without eyes and a nose.

“She has lots of questions,” Cassidy’s mother, Susan, told WBTV. “I told her I always wondered, ‘why me?’ when it came to being Cassidy’s mom. But I have learned it has nothing to do with me. It’s all about how Cassidy can inspire others. And what mom wouldn’t want that of their child?”

MOBILE, Ala. — The 2-year-old Alabama boy known as the “Miracle Baby” succumbed to his rare and deadly condition Saturday night.

Eli Thompson was born in 2015 with congenital Arhinia, an extremely rare condition that leaves babies without nasal structures or passages, AL.com reports. The condition affects just one in 197 million people.

Eli’s father, Jeremy Finch described his son as “very, very bright and happy, always smiling and giving everybody fist bumps.”

Finch, took to Facebook Sunday to announce Eli had passed away.

The post read, “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 said. “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’s family is finalizing funeral arrangements.

A BABY born without a nose has stunned doctors who say they’ve never seen the birth defect before.

The infant was delivered in Fallujah, Iraq, two weeks ago.

4 A baby has been born without a nose in Fallujah, IraqCredit: Jam Press

Medics say the newborn has microcephaly – a condition where the head is smaller than normal, usually because the brain hasn’t developed properly.

It can be caused by a genetic abnormality, drug or alcohol abuse by the mother, or being exposed to a toxin or virus such as Zika during pregnancy.

Images of the newborn were published by Fallujah Birth Defects, which has been documenting congenital malformation in the city, which was heavily bombed during the Iraq war.

Rare abnormality

The organisation said it is the first time they have ever seen a case of microcephaly since setting up in 2004.

They said the child, whose gender hasn’t been made public, comes from a family who live in a rural area and has three healthy older siblings.

Writing in comments on Facebook, the organisation said that the nose deformity was due to a cleft lip and palate and everything else in his body was considered healthy.

They added that the youngster was only able to breathe by gasping as the family had “refused” a tracheotomy, which is where a tube is inserted into the windpipe.

Similar cases

In another similar case, an American toddler was born without a nose but died in 2017 at the age of two.

Eli Thompson had no nasal passages or sinus cavities – an extremely rare condition known as congenital arhinia – which only affects one in 197 million births.

He had a tracheotomy to help him breathe at only five days old and was able to communicate through sign language.

In 2015, he got the chance to meet another child with the same condition – little Tessa Evans from Ireland who was two years old at the time.

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After the pair met, Tessa’s mum Grainne said: “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.”

Thanks to genetic research, Tessa, now six, has been diagnosed with BAM Syndrome – Bosma, arhinia, microphthalmia syndrome.

It comes after a baby girl was born with her own twin growing inside her tiny belly.

The little girl, called Itzamara, was born on February 22 in Colombia in an incredibly rare example of a “foetus-in-foetu” birth, first described in 1808 but rarely seen since.

4 The infant, who was born on March 10, reportedly has a rare condition known as microcephalyCredit: Jam Press 4 Eli Thompson died at just two years old, in 2017, pictured here with his dadCredit: Facebook 4 Little Tessa Evans from Ireland, now aged six, was also born without a nose

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