Parents hoped baby girl would help them get over loss of their son... until they got heartbreaking news
A Kansas family's dream of healing was shattered just moments after welcoming their baby girl into the world.
Fourteen years ago, Christina and Adam Hannan faced every parent's worst nightmare, the loss of their son, Myles.
His passing left a hole in their hearts, one they hoped might finally begin to mend five months ago with the birth of their daughter, Annalise.
But the moment she was born, their world began to collapse all over again.
Annalise wasn't crying. She wasn't moving. Doctors rushed in - and within hours, the Hannans were dealt a second, unimaginable blow.
Their newborn was diagnosed with congenital hypomyelinating neuropathy, a nerve disorder so rare that fewer than 50 cases have ever been recorded across the globe.
Today, only seven people are known to be living with the 'super rare' condition.
The condition, which begins at birth, prevents the body from producing enough myelin - the vital protective sheath that coats nerves. Without it, nerve signals can't travel effectively, resulting in severe muscle weakness and neurological failure.
Most babies with the disorder don't live beyond their early years, according to the National Library of Medicine.
'This is Annalise,' her father Adam told Fox4. 'Annalise was born with a super rare genetic disorder.'
She doesn't cry. She breathes through a tracheostomy. She feeds through a tube. And every night, she sleeps connected to a ventilator - each day a fragile victory against the odds.
But what makes Annalise's diagnosis even more devastating is that her parents have been here before.
'We know one of the 50,' Adam said. 'Because he was our son. We had a son with this same condition.'
Their son Myles lived just 20 months.
Now, the Hannans are bracing for the same unthinkable journey, with the same merciless disease. And yet, amid the heartbreak, they have chosen to cherish every heartbeat, every moment.
'It's both hard and good at the same time,' Adam Hannan (pictured with baby Annalise) said, 'our mission is to let her know that she is loved - as much and as often as we can'
'It's horrible, but every day is a gift,' Christina said. 'So you wake up, and it's like...we have today.'
'It's both hard and good at the same time,' Adam added. 'Our mission is to let her know that she is loved - as much and as often as we can.'
And somehow, in the face of so much sorrow, they continue on.
'We have to - that's the thing,' Adam said. 'You have to put one foot in front of the other. You just have to. There's no choice. So we proceed with joy.'
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
The Guardian
26 minutes ago
- The Guardian
Key takeaways from world's largest cancer conference in Chicago
Doctors, scientists and researchers shared new findings on ways to tackle cancer at the 2025 American Society of Clinical Oncology annual meeting, the world's largest cancer conference. The event in Chicago, attended by about 44,000 health professionals, featured more than 200 sessions on this year's theme, Driving Knowledge to Action: Building a Better Future. Here is a roundup of the key studies. An immunotherapy drug could help some cancer patients live years longer without the disease getting worse or coming back, a trial found. Pembrolizumab, sold under the brand name Keytruda, kept head and neck cancers at bay for five years, compared to 30 months with standard care. It also cut the risk of the disease returning in another part of the body. A second study showed people with a deadly form of skin cancer could live longer with an innovative one-time immunotherapy. Almost one in five patients with advanced melanoma survived for five years after receiving lifileucel, with tumours shrinking in the majority of cases, the trial found. Car T-cell therapy is a new form of immunotherapy where a patient's own T-cells – a type of white blood cell – are tweaked in a lab to target and kill cancer cells. The designer cells are then infused back into their bloodstream to fight the disease. One trial found cancer patients treated by Car T-cell therapy can live 40% longer. The therapy has already proved successful in treating blood cancers. Now results from the world's first randomised controlled trial of Car T-cell therapy in solid tumours suggest it could be transformative in the fight against these cancers too. Solid tumours represent about 90% of all cancers, including breast, lung and pancreatic cancer. In the trial hailed as a 'milestone' by experts, patients with advanced gastric or gastro-oesophageal junction (GEJ) cancer treated with Car T-cell therapy lived on average about 40% longer than patients who received standard care. A second Car T-cell therapy shrank tumours in 62% of patients with recurrent glioblastoma, a rare event for a fatal brain cancer with few treatment options, researchers reported in Chicago. 'Seeing recurrent [glioblastoma] tumours shrink like this is extraordinary, because the immunotherapy drugs that we've tried in the past have been unable to do that,' said the study's lead author, Dr Stephen Bagley, of the University of Pennsylvania. In a world first, doctors announced at the conference that thousands of cancer patients in England would benefit from a DNA blood test that saves lives by fast-tracking them on to personalised treatments. The liquid biopsy looks for circulating tumour DNA (ctDNA) to find specific genetic variations of cancer. The NHS will offer it to patients with lung and breast cancer – two of the most common forms of the disease. Rapid results mean patients can immediately be offered drugs and treatments specifically tailored to the genetic profile of their disease, significantly increasing their survival chances and paving the way for a new era of precision medicine. Exercise slashes the risk of death in cancer patients by more than a third, a landmark trial found. Physical activity could also prevent the disease coming back and stop new tumours developing, as well as lifting mood, reducing fatigue and boosting strength. The world's first randomised clinical trial to specifically evaluate if a structured exercise regime after treatment could reduce the risk of recurrence or new cancers in patients took place over more than a decade. Hailed as gamechanging by experts, the results show it could. The trial found patients had a 37% lower risk of death and a 28% lower risk of their cancer coming back or new cancers developing, compared with patients who received only health advice. 'When we saw the results, we were just astounded,' said the study's lead author, Dr Christopher Booth, of Queen's University in Kingston, Canada. Margaret Tubridy was one of 889 patients with colon cancer recruited to the trial from six countries – the UK, US, Australia, France, Canada and Israel. Five years after her diagnosis, she told the Guardian she was now free of cancer and healthy, with no signs of the disease coming back. Amid a series of breakthroughs aimed at tackling the most common cancer in women, doctors were told a new drug can stop some breast cancer tumours before they grow. A trial showed that camizestrant stops cancer cells from using hormones to grow, which helps patients stay well longer and delays the need for chemotherapy. It was the first global study to show that using blood tests to find early signs of cancer resistance to treatment helps patients. The study looked at patients who had hormone-positive, HER2-negative breast cancer, which is about 70% of cases. Results showed patients given camizestrant reduced their chances of cancer progression by 56%, compared with standard therapies. 'This is going to be very impactful for our patients,' said Dr Hope Rugo, the head of breast medical oncology at City of Hope hospital in Duarte, California. A second trial found that a new triple therapy for aggressive, advanced breast cancer slows the progression of the disease, delays the need for further chemotherapy and helps patients live longer. Artificial intelligence could help end a 'postcode lottery' for a life-extending treatment for prostate cancer, researchers said. Abiraterone is a hormone therapy described as a 'gamechanger' that works by blocking the production of testosterone, which fuels prostate cancer growth. It has already helped hundreds of thousands with advanced prostate cancer to live longer. But some countries, including England, have stopped short of offering the 'spectacular' drug more widely to men whose disease has not spread. A team from the US, UK and Switzerland have built an AI test that shows which men would most likely benefit from abiraterone. The breakthrough will enable healthcare systems to roll out the drug to more men, and spare others unnecessary treatment.
Daily Mail
43 minutes ago
- Daily Mail
Family member of Mary Lou Retton makes alarming claim about her health after DUI arrest
Mary Lou Retton is still unable to draw a full breath and only needs one drink to 'throw off her brain chemistry', her ex-brother-in-law has revealed after her recent DUI arrest. The 57-year-old Olympic legend, who overcame a near-fatal illness back in 2023, was arrested on May 17 in Marion County for 'driving under influence of alcohol, controlled substances, or drugs' before being released after personally posting a $1,500 bond. Just over a year since a rare form of pneumonia left her fighting for her life in a hospital ICU, news of Retton's booze-fueled antics sparked concern as she continues to undergo treatment for long Covid and lung problems. And according to Shaun Kelley, the brother of her ex-husband Shannon, just one drink is capable of causing a chemical imbalance in Mary Lou's brain because of the medications she's currently taking. 'She couldn't even take a full breath when I talked to her, she takes these little panting breaths,' Shaun told The New York Post about his ex-sister-in-law, whom he says has no history of alcohol abuse. He also added: 'She is on all these meds and one drink could throw off her brain chemistry. Retton, who is said to be 'healing' well and laying low in West Virginia since the arrest, came under fire in the wake of her pneumonia battle over $500,000 worth of charity donations made to help fund her medical bills. After her four daughters - whom she shares with Shannon - set up a crowdfunding page, the family soon drew criticism after refusing to clarify where the donations would be going. Retton's claim to not have insurance was also doubted by some. But seven years on from her divorce from his brother, Shaun said: 'She's a great mother and a giving person, she raised four amazing daughters,' before adding that he hopes she gets better. While there was a happy ending for her in 2023, doctors briefly feared for Retton's life as her daughters delivered what they thought would be their final farewell to their mother. Even now, the former gymnast fears she will never properly recover from the damage to her lungs. 'It's been really hard,' she said in an emotional interview with People in 2024. 'My lungs are so scarred. It will be a lifetime of recovery. 'My physicality was the only thing I had and it was taken away from me. It's embarrassing.' Retton believes she recovered from the terrifying ordeal as 'God wasn't ready' for her yet, despite admitting that she is extremely fortunate to still be alive. 'Girl, I should be dead,' she added. 'The doctors told them [daughters] to come to say their goodbyes. 'They prayed over me, and McKenna said, 'Mommy, it's OK, you can go.' 'I didn't have much of a relationship with my mother, but I can't imagine what that was like, to watch their mom on her deathbed.'
The Independent
2 hours ago
- The Independent
Blood test for Alzheimer's could soon be available on the NHS
A new blood test for Alzheimer's disease has been found to accurately detect early symptoms of the illness, according to new research. Experts from the Mayo Clinic in the US examined two proteins in blood plasma – amyloid beta 42/40 and p-tau217 – which are associated with amyloid plaque build-up, a hallmark of Alzheimer's disease, to provide further evidence that blood tests can accurately diagnose dementia. The study, which was carried out on more than 500 people in an outpatient memory clinic, found the blood test was highly accurate, with 95 per cent sensitivity. That means it was 95 per cent accurate in picking up people with memory problems, with very few cases missed. It was also 82 per cent for specificity, meaning it was also highly accurate in ruling out people without dementia. The blood test has already been approved by the Food and Drug Administration regulator in the US. Dr Gregg Day, who led the study in the Alzheimer's and Dementia journal, said the test was as good as more invasive tests currently in use. 'When performed in the outpatient clinical setting, this is similar to the accuracy of cerebrospinal fluid biomarkers of the disease and is much more convenient and cost-effective.' Overall, researchers found that p-tau217 levels were higher in patients with Alzheimer's disease versus those without the disease. Dr Day said the next steps in the research were to evaluate blood-based testing in more diverse patient populations and people with early Alzheimer's who show no cognitive symptoms. Dr Richard Oakley, associate director for research and innovation at the Alzheimer's Society in the UK, said the results 'suggest this test is very accurate' and could be used alongside other tests and observations from a trained health professional. 'While focused on Alzheimer's disease, the test was evaluated in people with other types of dementias too, showing that it may help with differentiate causes of cognitive decline – though more research in diverse groups of individuals and in community-based setting is still needed. 'Currently diagnosis options in the UK are often slow, expensive and can be invasive, meaning thousands miss out on the benefits one can bring. 'It's great to see blood tests like this approved for clinical use in the US – we hope to see the same in the NHS, which is why we're part of the Blood Biomarker Challenge.' The Blood Biomarker Challenge is a multi-million-pound research programme supported by the Alzheimer's Society, Alzheimer's Research UK and the National Institute for Health and Care Research. Its goal is to bring blood tests for dementia diagnosis to the NHS by 2029. Dr Julia Dudley, head of research at Alzheimer's Research UK, said: 'We urgently need to improve how we diagnose dementia and it's great to see international research working towards this goal. 'Blood tests in this study look at p-tau217 and amyloid beta 42/40, and showed the tests offered high accuracy in confirming Alzheimer's disease. 'This study adds to the growing evidence that blood tests can detect the diseases that cause dementia in people with early memory and thinking problems. 'An important point to consider is that people taking part in research don't always reflect the full diversity of those affected by dementia, who might have additional conditions or other characteristics. 'That is why work is needed to understand whether these blood tests work in a real-world setting.'
