Baby born without eyes due to extremely rare condition

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The mother of a twin daughter who was born without eyes due to a very rare condition says her child is a "beautiful, happy, thriving little girl".

Darrah O'Sullivan, 28, and her fiancé Vince Greenaway, 30, welcomed twins Maeve and Orla on April 8, 2024, at 36 weeks.

Initially, "everything seemed normal" until a pediatrician noticed that Maeve had not opened her eyes.

The day after, doctors diagnosed Maeve with bilateral anophthalmia, a condition in which a baby is born without eyes.

It affects about one in 100,000 births, according to the NHS.

She received confirmation that she had no other health problems.

They started adjusting to their new life, figuring out how to help their daughter grow and develop.

Maeve has been fitted with conformers, which are plastic shells that help her eye sockets develop normally.

These will later be replaced with prosthetic eyes, identical in blue to her twin sister's eye color.

Darrah said: "Maeve is 10 months old now, and I look back and think, 'What on earth were we worried about?'

“Maeve is the most beautiful, happy, and thriving little girl… so what if she can't see?”

“She views the world from a unique perspective, and that doesn't necessarily mean it's a negative aspect.”

Maeve's blindness, or her condition, will never be considered a forbidden topic in our home… we will all learn braille and it will become a completely ordinary part of our daily life.

We don't want her condition to ever be a barrier to her pursuing anything she wants to do.

Darrah, like Vince, works in management. She had her daughters at 36 weeks, after what she called an "absolute whirlwind" of being induced and then undergoing a C-section.

A few hours later, a pediatrician observed that Maeve had not yet opened her eyes, describing it as "strange".

"We hadn't even realized it at first because she was so small, we were completely in the dark about it," Darrah said.

We realized by their saying 'strange' and their tone of voice that something wasn't quite right.

She was diagnosed the following day.

“There was a significant amount of trauma in the first few days because it's not what you anticipate.”

Darrah added, "It was the best and the worst week of our lives all at once."

An MRI scan when Maeve was five days old confirmed her eye condition was an "isolated problem," and with no other health concerns, she was allowed to go home after a week in the hospital.

We've been really optimistic about everything since we spent a few days together as a family.

It has been a "huge learning curve" for the family because they had never heard about bilateral anophthalmia and most people they've met have never heard of the condition either.

"People can be nosy when she's in the stroller or when we're on vacation," Vince added.

We just say she has this condition and try to explain it to people.

And Macs, a support organization for individuals with microphthalmia, anophthalmia, and coloboma eye disorders.

Maeve has three specialists who assist her with mobility and tactile play, and will have help learning braille when she gets older.

Darrah added: "Teaching her how to crawl and all those little things that most babies learn through sight, we just have to do it in a different way."

“As she grows older, our understanding of being blind will continue to expand, and we will continue to learn and adapt as we go.”

support group.

"Her specific condition is quite uncommon, but actually being blind isn't, and there's a lot of assistance available for someone who is blind to navigate the world," Darrah added.

We don't think her condition will prevent her from doing anything she wants to do.

They have raised over $12,000 for the charity so far, specifically on April 27 with Darrah's sisters, Maddie and Chloe.

Vince said: "The idea came from a few beers and a bit of emotion – obviously, the London Marathon is on TV every year and was on just after the girls had been born."

Darrah added: "I'm really proud of them all, it's incredible – Vince gets up at 5 am to run, then still goes off to work and helps me take care of the girls."

Vince, Chloe, and Maddie have been training for months with weekly sessions of running 5-10 kilometers and a 20-kilometer run on Sundays.

Vince said, "It will be a massive accomplishment, and we're all hoping to bring attention and funds to the charity and the cause."

To contribute to the family's fundraising page, please visit: justgiving.com/page/runningformaeve.

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