Baby born without eyes due to extremely rare condition
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.
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
The Independent
29 minutes ago
- The Independent
Secret lovers of man unite to keep him alive after brain bleed
A man in a 'vegetative state' will be kept alive after his secret lovers united to oppose a hospital's bid to remove his life support. Referred to as YD in court documents, the 60-year-old man entered what is called a prolonged disorder of consciousness after suffering from a bleed to the brain in October 2024. In August, the Hillingdon Hospitals NHS Foundation Trust asked the Court of Protection for permission to remove his clinically assisted nutrition and hydration, which he needed to stay alive. Though YD has been breathing independently since March 2025, he received all of his nutrition and medications through a feeding tube. Without this life support, a doctor concluded he would die within one to three weeks. However, his two partners, both of whom he has known for over 20 years, have successfully stopped the hospital from doing so after telling a judge about his strong belief in the power of spiritual healing. The pair, referred to as JG and MB, told Mrs Justice Theis that YD would not have wanted his support to be withdrawn despite his doctors assessing he was in a 'vegetative state'. Despite not having known each other before YD fell ill, Mrs Justice Theis said: 'They were each able to independently confirm many common features about YD's wishes and beliefs. In particular, regarding the depth of his interest in the spiritual world and his limitless curiosity about such matters that he held strong beliefs about.' Mrs Justice Theis said these beliefs 'are likely to be relevant factors that would inform his decision if he had capacity and would be likely to be a factor in him wishing and feeling that he wanted to continue to be provided with clinically assisted nutrition and hydration'. In the court documents, YD is described by JG - who he has known for 20 years - as 'easy to get on with, humorous, determined and unique'. In her statement, she said she believed YD had not given up on life and 'would absolutely want to continue living, with any chance to improve (however small), until he passes away in a natural and unforced way.' Both she and MB visit YD for six hours each day, with the court documents describing the pair as providing emotional and physical care for him at his bedside. MB has known YD for 24 years, with the pair having gotten engaged seven years ago and lived with each other for four years. She described improvements she had observed and considered he was 'healing himself', noting he has been able to squeeze with his hand and lift his wrist. She said he opens his eyes when she gives him a kiss on arrival and that he can track her with his eyes. Refusing the trust's application, Mrs Justice Theis said: 'Whilst it is recognised that any awareness on the part of YD, if present, is extremely limited and there may be little or no further improvement and a trajectory of general deterioration it is far from clear that in the circumstances YD is in he would regard his continued existence as a burden. 'There is a strong presumption in favour of preserving life which, in my judgment, having carefully evaluated the evidence in this unusual case, the Trust has not discharged.'
The Independent
29 minutes ago
- The Independent
Mounjaro weight-loss drug price to almost triple in UK
The price of popular weight-loss jab Mounjaro will nearly triple after the US -owned company equalised costs in markets across the globe. A month's supply of the highest doses of the ' King Kong ' of weight loss medicine will rise from £122 to £330 - an increase of 170 per cent. At least 500,000 people in the UK take either Mounjaro or Wegovy, another weight loss jab, via prescriptions from private online pharmacies, according to retailers. In June, the NHS offered Mounjaro to obese patients after health experts calculated from NHS England data that there were 97,500 patients who would benefit from the treatment. Mounjaro's owner Eli Lily said it would not raise the price paid by the NHS, and it was working with private healthcare providers to maintain access to the jab. The NHS said the price increase would not affect its commissioning of the medicine for people with obesity and type 2 diabetes. Eli Lilly launched Mounjaro in the UK in February last year, while rival Novo Nordisk's Wegovy treatment has been available in the country since September 2023. The company said when it launched Mounjaro in the UK, it agreed to a list price " significantly below" that in its three other European markets to prevent delays in availability through the NHS. 'We are now aligning the list price more consistently,' a spokesperson said. The move reflects how the pharmaceutical industry is navigating policy changes in the US, by far its most lucrative market. It comes after Donald Trump's administration complained about 'foreign freeloaders' who rely on the US to pay more for medicine. The US pays more for prescription drugs than any other country, often nearly three times as much as other developed nations. Mr Trump says he wants to narrow this gap to stop Americans from being "ripped off". In the UK, the NHS was told to offer Mounjaro to patients with a BMI of over 40 and at least four clinical conditions related to their weight, such as heart disease or type 2 diabetes. Over the next three years, about 240,000 patients are expected to be eligible for the treatment. It came after the National Institute for Health and Care Excellence (Nice) warned many individuals might regain weight if not adequately supported after ceasing treatment. It stressed that those coming off the drugs should be offered "structured advice and follow-up support" to mitigate weight gain. This guidance applies to individuals receiving these treatments through the NHS. The new 'quality standard' from Nice said NHS patients should be monitored for at least a year after they complete treatment, and extra support should be offered if needed. It emphasises building 'long-term behavioural habits, use self-monitoring tools, and draw on wider support – from online communities to family-led interventions and local activities'. This standard, a type of guidance for the health services in England and Wales, sets out expectations for health providers including how they should support patients. Weight-loss injections, also known as GLP-1 receptor agonists, work by mimicking the natural hormone which regulates blood sugar, appetite and digestion.
Daily Record
29 minutes ago
- Daily Record
Price of weight loss drug Mounjaro to rise - how much more users will pay
Eli Lilly will raise UK prices for Mounjaro by up to 170 percent to 'address pricing inconsistencies compared with other developed countries, including in Europe' Eli Lilly is sharply increasing the UK price of its weight-loss and diabetes drug Mounjaro, with the cost of some doses set to rise by as much as 170 percent from September. The pharmaceutical company said the move is intended to 'address pricing inconsistencies compared with other developed countries, including in Europe' and ensure a fairer global contribution to funding medical innovation. The most dramatic increase will see the month's supply of the highest doses of the drug jump from £122 to £330. Lower doses will rise by between 45 and 138 percent. However, Lilly stressed that the new list prices will not apply to the NHS, with the company continuing to supply the health service at the existing rate to avoid disrupting patient access. Private healthcare providers, who also prescribe the drug, will be subject to the increase but can negotiate confidential discounts with the company. The move comes against the backdrop of political pressure from the United States, where former president Donald Trump has criticised what he calls 'foreign freeloaders' benefiting from lower drug prices abroad while Americans pay substantially more. In a speech, he singled out obesity treatments, saying a friend in London had bought the 'fat shot drug' for far less than in the US. Research by the Rand Corporation suggests that US drug prices are, on average, almost three times higher than those in many other advanced economies. The pharmaceutical industry has been working to counter the potential threat of a 'most favoured nation' policy, which could peg American prices to those charged internationally. Lilly noted that the UK was one of the first markets where it launched Mounjaro and said its initial priority had been to get the medicine to diabetes patients quickly. 'At launch, Lilly agreed to a UK list price that is significantly below the European average to prevent delays in NHS availability. With changes in the environment and new clinical evidence supporting the value of Mounjaro, we are now aligning the list price more consistently to ensure fair global contributions to the cost of innovation,' the company said. Negotiations between drugmakers and the UK government over NHS medicine costs have been tense, with discussions about changes to a clawback tax on drug sales dragging past agreed deadlines. The government's most recent proposals included plans to spend more on medicines, but industry leaders expressed frustration at the lack of detail or clarity on whether this would mean buying more medicines or paying higher prices for existing ones. The National Institute for Health and Care Excellence (NICE) has recommended Mounjaro for up to 3.4 million people in England. Join the Daily Record WhatsApp community! Get the latest news sent straight to your messages by joining our WhatsApp community today. You'll receive daily updates on breaking news as well as the top headlines across Scotland. No one will be able to see who is signed up and no one can send messages except the Daily Record team. All you have to do is click here if you're on mobile, select 'Join Community' and you're in! If you're on a desktop, simply scan the QR code above with your phone and click 'Join Community'. We also treat our community members to special offers, promotions, and adverts from us and our partners. If you don't like our community, you can check out any time you like. To leave our community click on the name at the top of your screen and choose 'exit group'. If you're curious, you can read our Privacy Notice. However, concerns over affordability led to an agreement for a phased rollout, starting with around 250,000 patients who have the highest clinical need over the first three years. NHS England confirmed that the upcoming price changes would not affect how it provides the drug to eligible patients with obesity or diabetes. 'Mounjaro is a cost-effective and valuable tool to support people to reach a healthier weight and the wider health and lifestyle benefits that offers,' it said. The changes place the UK price closer to the European average and come at a time when pharmaceutical companies are increasingly conscious of how international price differences could shape future US policy decisions.
