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A mother has described her twin daughter, who was born without eyes due to an extremely rare condition, as a “beautiful, happy, thriving little girl”.
Darrah O’Sullivan, 28, and her fiance Vince Greenaway 30, welcomed twins Maeve and Orla at 36 weeks on April 8, 2024.
Initially, “everything seemed normal” until a paediatrician noticed that Maeve had not opened her eyes.
The following day, doctors diagnosed Maeve with bilateral anophthalmia, a condition where a baby is born without eyes.
It affects approximately one in 100,000 births, according to the NHS.
Following an emotional week filled with concerns about Maeve’s future, the family, from Watford, Hertfordshire, received reassurance that she had no other health issues.
They began adapting to their new life, learning how to support their daughter’s development.
Maeve has since been fitted with conformers – plastic shells that aid in the normal development of her eye sockets.
These will later be replaced with prosthetic eyes, matched in blue to her twin sister’s eye colour.
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, thriving little girl… so what if she can’t see?
“She sees the world through a different way but that doesn’t necessarily mean it’s a bad thing.
“Maeve being blind, or her condition, will never, ever be a taboo subject in our house… we will all learn braille and it will just be such a normal part of our life.
“We don’t want her to ever feel like her condition will stop her doing anything.”
Darrah, who like Vince works in management, gave birth to her daughters at 36 weeks, after an “absolute whirlwind” of being induced and then having a C-section.
A few hours later, a paediatrician noted Maeve had still not opened her eyes, describing it as “strange”.
“We hadn’t even noticed because she was so tiny, we were fully unaware,” Darrah said.
“We knew by them saying ‘strange’ and their tone of voice that something wasn’t right.”
Maeve was diagnosed the next day.
“There was quite a lot of trauma in the first few days because it just isn’t what you expect,” Vince said.
Darrah added: “It was the best and the worst week of our lives wrapped up into one.”
An MRI scan when Maeve was five days old confirmed her eye condition was an “isolated problem”, and with no other health issues, she was allowed to go home after a week in hospital.
“We spent a few days processing as a family but ever since then, we’ve been super positive about everything,” Vince said.
It has been a “huge learning curve” for the family because they had never heard about bilateral anophthalmia and found most people have never heard of the condition.
“I would say people can be nosy when she’s in the pram or when we’re on holiday,” Vince added.
“We just say she has this condition and try to explain to people.”
The family has received ongoing support from Guide Dogs and Macs, a support charity for people with microphthalmia, anophthalmia and coloboma eye conditions.
Maeve has three specialists assisting her with mobility and tactile playing, and will have help to learn braille when she is older.
Darrah added: “Teaching her how to crawl and all those little things that most babies learn through vision, we just have to do it differently.
“But as she gets older, our knowledge of being blind will grow and we’ll keep learning as we go.”
Through Macs, Vince and Darrah have connected with other parents of children with the condition and are part of a Facebook support group.
“Her specific condition is super rare, but actually being blind isn’t… and there is so much out there to help a blind person navigate the world,” Darrah added.
“We don’t feel like her condition will necessarily hold her back or stop her from doing anything, really.”
To increase awareness of the condition, Vince will run the 2025 London Marathon for Macs on April 27 with Darrah’s sisters, Maddie and Chloe. They have raised more than £12,000 for the charity so far.
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 so proud of them all, it’s amazing – Vince gets up at 5am to run, then still goes off to work and helps me with the girls.”
Vince, Chloe, and Maddie have been preparing for months with training sessions of 5-10km during the week and a 20km run on Sundays in preparation.
Vince said: “It’ll be such a huge achievement, and we all just want to raise awareness and money for the charity and the condition.”
To donate to the family’s JustGiving page, visit: justgiving.com/page/runningformaeve.
