Parents Welcome Baby Girl, 4 Months Later They Realize Something Is Wrong
Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources.
The mother of a 6-year-old girl has shared the story of learning her daughter was born blind, and how far they have come together as a family.
Skin specialist Hayley Steinbach, 30, lives in Essex in the U.K. with her builder husband, Zak, 31, and their three children, including daughter Elsie. She was diagnosed with optic nerve hypoplasia as a baby—but getting that initial diagnosis was far from easy.
"The moment I realized Elsie, at 4 months old, wasn't tracking anything properly, I was so confused and concerned," Steinbach told Newsweek. "Our doctor had told me eight times that Elsie's eyes were OK, and it was just a blocked tear duct."
Elsie is the couple's first child, and so the new parents were "unaware of how delayed her vision was—we thought it was normal eye behavior for a newborn."
But when Steinbach realized her daughter wasn't able to give her any eye contact at all, she returned to the doctor and pleaded for help. This time, the doctor shared her concern, and asked her to step out of the room as he made an immediate hospital appointment for the baby girl.
"As soon as I walked out, into the waiting room, I broke down and rang for my husband to come immediately as my legs went to jelly—I was so scared for Elsie," Steinbach said.
"Five days later she was diagnosed with optic nerve hypoplasia. We had no idea what this condition was, and what this meant for our baby girl."
Optic nerve hypoplasia is a congenital disorder where the optic nerves in the eye are underdeveloped. While the cause of ONH is not yet understood, it can lead to abnormal eye movements, and can lead to a person having no light perception at all, according to the National Organization for Rare Disorders (NORD).
Left, Hayley Steinbach, Zak embrace Elsie on the day she was born; and, right, the baby aged 6 weeks.
Left, Hayley Steinbach, Zak embrace Elsie on the day she was born; and, right, the baby aged 6 weeks.
TikTok @elsieseyearmy
Recalling those terrifying early days, Steinbach said: "My world went black and went quiet like when someone dies—I felt heartbroken and gut sick. I was terrified for Elsie, and I had no idea what was best for her. We were new to becoming parents, and now we were new to how to help someone who's blind.
"I'd never even met a blind person before, never knew what Braille was. We were completely clueless, which made it so scary—and no one else around us could help us, no one around us knew what was best for Elsie or how any of us could help Elsie the best."
The couple were "so worried and scared for her future"—but, together, the family got through it. Steinbach and Zak learned alongside Elsie as she navigated the world, including learning Braille, as they knew it would "now be a part of our life, and we would need to know it to be able to teach Elsie."
As time went on, they learned that Elsie has "no vision in her right eye, and [in] her left eye, she has minimal vision, but she uses that vision to her fullest."
"Elsie's eyesight has gone against what the consultants said and still say now; they are amazed at what she can do with the small amount of vision she does have," proud mom Steinbach said. She added that Elsie's optic nerves are the "same size in both eyes," so it is a "miracle" she has any sight in her left eye.
Elsie now wears glasses to help her left eye with long-sightedness, and uses both Braille and size-72 text to read and work at school. And, close to seven years after that first terrifying diagnosis, her mom says Elsie has "made all my thoughts and worries go away."
"There is nothing she's not able to do like a child her age, but she just does it in her own little way and is teaching us along the way.
"Elsie is full of confidence and no fear; she does everything! I never imagined her life to be so 'normal'. Elsie is incredible and amazes us every single day; she is the happiest little girl you could meet."
The little girl, described as "extremely confident," is now an older sister to Dolsie, 3, and 2-year-old Elvis, and has big plans for her life, as her mother said her daughter "wants to be a performer—acting, singing, dancing."
Left, the family smile on a trip to Disney not long after Elsie's diagnosis, and right, the girl now, aged 6.
Left, the family smile on a trip to Disney not long after Elsie's diagnosis, and right, the girl now, aged 6.
TikTok @elsieseyearmy
Steinbach shared Elsie's story to her TikTok account, @elsieseyearmy, where she wrote in a caption that she hopes it can "help families in [those] dark few months see that being blind won't stop your baby from doing anything."
It had a major online reaction, racking up close to 3 million views and more than 92,000 likes, as commenters flocked to the video asking questions about Elsie and her journey, and some sharing their own experiences with ONH.
A fellow parent wrote: "My little boy was thought to be completely blind for life but is now just completely blind in his left eye and has 6/38 vision in his right and gets on with life almost as a normal sighted child, I don't understand how but he's amazing."
Another urged Elsie's parents to continue to "love her and encourage everything, be her biggest cheerleader," as a third posted: "What absolutely beautiful parents you are. She is utterly perfect in every way."
And as one comment read: "Sweet Elsie! I wish you a life full of joy and happiness in the best form available! God Bless you!"
Steinbach said: "I think mine and my husband's worries for Elsie will always be there; through every stage of Elsie's life, we will worry she will struggle and come up with more challenges. But, with Elsie's personality and determination, we know Elsie will not let anything affect her—it will affect us more as parents watching her."
In a message to everyone learning about Elsie's story, Steinbach added: "Elsie is blind, despite the small bit of vision she does have.
"Being blind does not mean seeing nothing; it means being severely sight-impaired, like Elsie is. Being blind does not stop Elsie from doing anything; she just does it in her own way."
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Newsweek
23 minutes ago
- Newsweek
New York Boomers Lose Medicare Battle
Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources. Newsweek AI is in beta. Translations may contain inaccuracies—please refer to the original content. New York's highest court has rejected a legal challenge by retired city workers seeking to block a plan to move them from traditional Medicare - with city-funded supplemental coverage - to private Medicare Advantage plans. Newsweek has contacted the New York City Law Department for comment via email. Why It Matters New York City is required by law to provide health insurance coverage for retirees formerly employed by the city. The roots of the policy go back to 2021, when city officials and leaders of major public employee unions agreed to cut $600 million annually from the city's healthcare spending. The agreed-upon solution was to shift roughly 250,000 retirees and their dependents to a Medicare Advantage plan - an alternative to traditional Medicare that typically offers lower premiums. At the time, City Hall, then under the helm of former New York Mayor Bill De Blasio, argued in favour of the change because of the annual savings it would generate. The current Mayor Eric Adams has since embraced the idea. But critics have said the plan would mean more out-of-pocket costs for former New York government employees. What To Know In a unanimous decision issued Wednesday, June 18, Judge Shirley Troutman of the State of New York Court of Appeals said the retirees failed to provide adequate evidence that the shift would reduce their health benefits. The court also found no legally binding agreement ensuring the city would maintain their existing coverage. Stock image/file photo: Medicare enrollment form. Stock image/file photo: Medicare enrollment form. GETTY "If forced into a Medicare Advantage plan, retirees will lose access to many of the doctors they depend on for life-saving treatment and will routinely be denied coverage for medical care. That is because, unlike traditional Medicare (a publicly run program), private Medicare Advantage plans limit access to medical providers and medical care in order to maximize profits," the Organization of Public Service Retirees said in a statement following the decision. Medicare Advantage plans are private insurance options approved by Medicare. They replace traditional Medicare Parts A and B, covering hospital and outpatient care — except hospice. Most also include prescription drug coverage (Part D). Insurance companies offering these plans get a set payment from Medicare for each person enrolled. They also charge patients out-of-pocket costs and often require them to use doctors in their network or get referrals to see specialists. What People Are Saying The Council of the City of New York Common Sense Council said in a statement: "While we are extremely disappointed with the Court of Appeals decision today, it only strengthens our resolve to fight for our municipal retirees and ensure they are provided the supplemental Medicare insurance they were promised. We encourage our colleagues to join us in supporting Intro 1096, which would prevent this administration and any future administration from taking away this fundamental right and forcing retirees into a lesser health insurance plan." Marianne Pizzitola, president of the NYC Organization of Public Service Retirees, said in a press release: "On behalf of 250,000 retirees, we call on the City Council and the next mayor to prevent us from being forced into a privatized Medicare Advantage plan and to let us continue receiving the health insurance we were promised and desperately need: traditional Medicare plus a supplemental plan." Justin Brannan, New York City Council Finance Committee Chair and Democratic candidate for city comptroller, said on X: "The City of New York should never, ever be screwing over retirees – and neither should the courts. Nobody will ever want to work for New York City again. Zero trust. Medicare Advantage is a bait and switch scam & betrayal. Enough! City Hall clearly doesn't care about retirees." What Happens Next While the Court of Appeals dismissed the retirees' primary claims, it sent the case back to a lower court to resolve remaining legal issues.
Newsweek
an hour ago
- Newsweek
Trump Considering Asbestos Ban Reversal Sparks Warning: 'Lives at Risk'
Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources. Newsweek AI is in beta. Translations may contain inaccuracies—please refer to the original content. The Trump administration will "reconsider" a ban on the use of asbestos in the U.S. that took a decades-long battle to be finalized, sparking concern among health advocates. "This is another attempt by industry, going back to when they blocked the first EPA asbestos ban in 1989, to allow for continued use of a deadly material responsible for some 40,000 U.S. deaths and some 250,000 worldwide deaths each year," Dr. Arthur L. Frank, a professor of public health and medicine at Drexel University, told Newsweek. "We know in some settings as little as one day of exposure can give some individuals cancer," he added. Newsweek has contacted the Environmental Protection Agency (EPA) via email for comment. File photo: Workers begin the abatement and demolition of a property contaminated with asbestos in Michigan. File photo: Workers begin the abatement and demolition of a property contaminated with asbestos in Michigan. Conor Ralph/The Flint Journal- via AP Why It Matters Asbestos was used by building and construction industries for strengthening cement and plastics as well as for insulation, roofing, fireproofing and sound absorption. Since 2000, more research uncovered the health risks associated with the mineral, and it has been classified by various U.S. departments as a known human carcinogen. Exposure to asbestos is linked to more than 40,000 deaths in the U.S. each year, according to the EPA under the Biden administration. Chrysotile asbestos, also known as white asbestos, is banned in 50 countries because of its association with lung cancer, and in 2024, the Biden administration finalized its own ban, meaning the last type of asbestos used in or imported into the country would be prohibited. What To Know According to court documents filed with the Fifth Circuit Court of Appeals, the EPA said that the process of re-evaluating the ban would take about 30 months, delaying the implementation of the ban finalized by the Biden administration. The move was opposed by the Asbestos Disease Awareness Organization, the court filings said. "Reconsidering the EPA's 2024 Chrysotile Asbestos Rule is deeply concerning," Linda Reinstein, president and co-founder of the Asbestos Disease Awareness Organization, told Newsweek. Reinstein lost her husband, Alan, to a type of lung cancer, mesothelioma, caused by asbestos. "While this rule was a landmark step under the Toxic Substances Control Act, it only banned one fiber—chrysotile—in six specific conditions of use," Reinstein added. "Now, due to litigation and political pressure, the EPA has signaled it may reverse core parts of the rule, including protections for chlorine and caustic soda manufacturing." The Office of Chemical Safety and Pollution Prevention, within the EPA, will be investigating whether the Toxic Substances Control Act "went beyond what is necessary to eliminate the unreasonable risk and whether alternative measures—such as requiring permanent workplace protection measures—would eliminate the unreasonable risk." The Toxic Substances Control Act includes the Biden administration's plan to ban asbestos from use in the U.S. When the Biden administration announced its finalization of the ban in the summer of 2024, the EPA administrator at the time, Michael Regan said: "The science is clear—asbestos is a known carcinogen that has severe impacts on public health." However, Trump, in his 1997 book The Art of the Comeback, said that asbestos is "100 percent safe, once applied." "I believe that the movement against asbestos was led by the mob, because it was often mob-related companies that would do the asbestos removal," he added. In 2018, Uralasbest, one of the world's largest producers and sellers of asbestos, put Trump's face, along with the words "Approved by Donald Trump, 45th president of the United States," on some of its products, according to the Guardian. What People Are Saying Dr. Arthur L. Frank, a professor of public health and medicine at Drexel University, told Newsweek: "Although this partial ban went through proper procedures, to now come and claim, as their document states, 'no party would be prejudiced by the requested abeyance,' fails to recognize that putting off this ban will lead to unnecessary disease and death for some Americans going forward. The U.S. has not yet joined some 70 countries in the world, including all developed countries, in banning—and in all other cases totally banning—the use of all forms of asbestos. "While there is currently little import of much raw asbestos fiber, products containing asbestos such as friction products and roofing materials can still be bought and used. The U.S. should have a comprehensive and total ban on import and use and should see that proper disposal takes place for tons still in place. Because of the long latency to develop disease, even with such a ban, new cases of asbestos disease will still be seen 50 years from now." Linda Reinstein, president and co-founder of the Asbestos Disease Awareness Organization, told Newsweek: "This rollback is happening in the context of broader deregulatory actions by the Trump administration. Executive Orders 14303 and 13771, combined with EPA staffing cuts, will severely limit the agency's ability to evaluate and manage chemical risks. These changes threaten to dismantle science-based safeguards and delay action on a known carcinogen that kills 40,000 Americans annually. "There is no safe level of asbestos exposure. Only federal legislation can ensure a comprehensive and lasting ban. That's why the bipartisan 2025 Alan Reinstein Ban Asbestos Now (ARBAN) Act is essential. It would ban all forms of asbestos, close dangerous loopholes and prevent further rollbacks." Senator Jeff Merkley, an Oregon Democrat, on Monday: "The Trump Administration's 'Polluters over People' agenda is once again threatening our health, this time undermining the chance for all Americans to have a future free of asbestos exposure. We know that asbestos is a killer, which is why it has been banned in more than 50 countries around the world. "The United States was starting to catch up, but the Trump EPA is delaying and rolling back this vital public health safeguard, undermining this progress. I will continue to explore all options—including legislation—to phase out all dangerous asbestos fibers and provide stronger protections for our health." What Happens Next While the EPA said, according to the court filings, it would need 30 months to review the legislation, it has requested that the court extend the suspension of the law for six months, subject to additional extension requests.
Newsweek
an hour ago
- Newsweek
Hearts Break at What Dad With Brain Cancer Sends His Daughter Every Day
Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources. Newsweek AI is in beta. Translations may contain inaccuracies—please refer to the original content. A father's daily act of love has left internet viewers emotional after his daughter shared the touching messages he sends her every morning, despite undergoing treatment for an aggressive brain tumor. Jessica Smallwood (@jesssmallwooddd), a 23-year-old hairdresser from Manchester in the U.K., posted a video on TikTok; it features the heartfelt "good morning beautiful" texts and selfies that her father, 62-year-old retired police officer Graham Fox, has sent her every day since his diagnosis. The clip quickly struck a chord online, amassing more than 100,000 likes and over 658,000 views. "Mine and my dad's relationship has always been up and down, but he has been the best dad to me and the best dad I could ask for," Smallwood told Newsweek. "We have all helped each other get through this. I would say mine and my dad's relationship has become something so precious. He is literally the most inspirational person in my life and the most positive person." A split image showing Graham Fox's smiley morning messages to his daughter. A split image showing Graham Fox's smiley morning messages to his daughter. @jesssmallwooddd/@jesssmallwooddd Smallwood said that her father's health scare began on March 27, when he experienced a sudden loss of speech during his usual morning dog walk. Initially believed to be a stroke, he was rushed to Salford Royal Hospital, where scans revealed a growth on his brain. Doctors were almost certain it was cancerous due to its shape; after further testing, he was diagnosed with a Grade 4 malignant glioblastoma—an aggressive and typically terminal brain cancer. Following consultations with his medical team, Fox joined a pioneering clinical trial at The Christie NHS Foundation Trust in Manchester, led by Dr. Gerben Borst. The trial involves a device called Optune, a portable, wearable system that delivers tumor-treating fields (TTFields) to interfere with the division of cancer cells in the brain. In a first-of-its-kind approach, Fox became one of the first patients in the U.K. to use the Optune device both before and after surgery. "As he said to me, 'if it helps people in the future, I'm up for anything,'" Smallwood said. Just under two weeks later, Fox underwent successful surgery at Salford Royal, with surgeons removing approximately 98 percent of the tumor. Since then, he has been undergoing radiotherapy five days a week at The Christie and receiving chemotherapy when his health allows. Smallwood said that the chemotherapy has been occasionally interrupted due to health issues such as chest infections, but radiotherapy remains consistent. Smallwood said she remembers sitting in the hospital that fateful day, feeling her world shift: "That's the day my dad's life changed, as well as all my family's." She described their close-knit unit, including her stepmother Jane, brothers Lewis and Cole, sister-in-law Beth, her three nephews—Ethan, George, Alfie—and another on the way, as well as other family members who continue to rally around her father. A split image showing Jessica and Graham hugging and a morning selfie Graham took in front of a rose plant. A split image showing Jessica and Graham hugging and a morning selfie Graham took in front of a rose plant. @jesssmallwooddd/@jesssmallwooddd Despite the difficult prognosis—doctors told the family the typical life expectancy with this type of cancer is around two years—Fox's resilience shines through in his daily texts. Smallwood said the selfies and messages started after that sobering consultation and haven't stopped since. "I literally get one every morning; sometimes, even a good-evening one," she said. "The real reason I love that he does this is not only so I can see him smiling every day, but it's so I have pictures to show my nephew in the future and show him that 'granddad never stopped smiling through the difficult times.'" Smallwood added that her father often sends the photos when he wakes up early, as he now struggles to sleep and usually only manages three or four hours a night. In a heartfelt gesture of support, Smallwood also raised £1,200 for The Christie's charity by participating in the AJ Bell Great Run—despite having never run before. "I thought, if I can do this and raise some money, I have to do it for my dad." The TikTok video struck a deep chord with viewers, many of whom shared their own stories of loss, hope, and solidarity in the comments. "He loves you so much it's beautiful," one person wrote. Another, Robyn Kelly, shared: "Bless him, he is so cute! I lost my Dad to a Glioblastoma Brain Tumor in 2018. Please hug your Dad for me, I hope he makes a full and quick recovery!" "What a heartbreaking but also beautiful video. Your dad is a great man and I wish him, and you all, nothing but the absolute best the world can offer. May he speedily recover," said a third commenter. Others praised Graham's positivity, calling him "an incredible man" and "a gentle soul." Smallwood expressed deep gratitude for the medical care her father has received from the British National Health Service, including Sue, a representative from Novocure (the company behind Optune), and Dr. Pietro D'Urso, the surgeon at Salford Royal who operated on her dad. Is there a health issue that's worrying you? Let us know via health@ We can ask experts for advice, and your story could be featured on Newsweek.
