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MONTROSE, Mo. It took Samantha Lesmeisters family four months to find a medical professional who could see that she was struggling with something more than her Down syndrome.

This story also ran on NBC News. It can be republished for free.

The young woman, known as Sammee, had become unusually sad and lethargic after falling in the shower and hitting her head. She lost her limited ability to speak, stopped laughing, and no longer wanted to leave the house.

General-practice doctors and a neurologist said such mental deterioration was typical for a person with Down syndrome entering adulthood, recalled her mother, Marilyn Lesmeister. They said nothing could be done.

The family didnt buy it.

Marilyn researched online and learned the University of Kansas Health System has a special medical clinic for adults with Down syndrome. Most other Down syndrome programs nationwide focus on children, even though many people with the condition now live into middle age and often develop health problems typically associated with seniors. And most of the clinics that focus on adults are in urban areas, making access difficult for many rural patients.

The clinic Marilyn found is in Kansas City, Kansas, 80 miles northwest of the familys cattle farm in central Missouri. She made an appointment for her daughter and drove up.

The programs leader, nurse practitioner Moya Peterson, carefully examined Sammee Lesmeister and ordered more tests.

She reassured me that, Mom, youre right. Somethings wrong with your daughter, Marilyn Lesmeister said.

With the help of a second neurologist, Peterson determined Sammee Lesmeister had suffered a traumatic brain injury when she hit her head. Since that diagnosis about nine years ago, she has regained much of her strength and spirit with the help of therapy and steady support.

Sammee, now 27, can again speak a few words, including hi, bye, and love you. She smiles and laughs. She likes to go out into her rural community, where she helps choose meals at restaurants, attends horse-riding sessions at a stable, and folds linens at a nursing home.

Without Petersons insight and encouragement, the family likely would have given up on Sammees recovery. She probably would have continued to wither within herself, her mother said. I think she would have been a stay-at-home person and a recluse. Samantha Sammee Lesmeister rides a horse with the help of instructors Rike Mueller (left) and Samantha Richardson at Remember to Dream, a therapeutic riding center in Cole Camp, Missouri. (Christopher Smith for KFF Health News) Samantha Sammee Lesmeister hugs a horse named Dragon. (Christopher Smith for KFF Health News)

A Whole Different Ballgame

The Lesmeisters wish Petersons program wasnt such a rarity. A directory published by the Global Down Syndrome Foundation lists just 15 medical programs nationwide that are housed outside of childrens hospitals and that accept Down syndrome patients who are 30 or older.

The United States had about three times as many adults with the condition by 2016 as it did in 1970. Thats mainly because children born with it are no longer denied lifesaving care, including surgeries to correct birth defects.

Adults with Down syndrome often develop chronic health problems, such as severe sleep apnea, digestive disorders, thyroid conditions, and obesity. Many develop Alzheimers disease in middle age. Researchers suspect this is related to extra copies of genes that cause overproduction of proteins, which build up in the brain.

Taking care of kids is a whole different ballgame from taking care of adults, said Peterson, the University of Kansas nurse practitioner.

Sammee Lesmeister is an example of the trend toward longer life spans. If shed been born two generations ago, she probably would have died in childhood.

She had a hole in a wall of her heart, as do about half of babies with Down syndrome. Surgeons can repair those dangerous defects, but in the past, doctors advised most families to forgo the operations, or said the children didnt qualify. Many people with Down syndrome also were denied care for serious breathing issues, digestive problems, or other chronic conditions. People with disabilities were often institutionalized. Many were sterilized without their consent.

Such mistreatment eased from the 1960s into the 1980s, as people with disabilities stood up for their rights, medical ethics progressed, and courts declared it illegal to withhold care. Those landmark rulings sealed the deal: Children with Down syndrome have the right to the same lifesaving treatment that any other child would deserve, said Brian Skotko, a Harvard University medical geneticist who leads Massachusetts General Hospitals Down Syndrome Program.

The median life expectancy for a baby born in the U.S. with Down syndrome jumped from about four years in 1950 to 58 years in the 2010s, according to a recent report from Skotko and other researchers. In 1950, fewer than 50,000 Americans were living with Down syndrome. By 2017, that number topped 217,000, including tens of thousands of people in middle age or beyond.

The population is expected to continue growing, the report says. A few thousand pregnant women a year now choose abortions after learning theyre carrying fetuses with Down syndrome. But those reductions are offset by the increasing number of women becoming pregnant in their late 30s or 40s, when they are more likely to give birth to a baby with Down syndrome.

Skotko said the medical system has not kept up with the extraordinary increase in the number of adults with Down syndrome. Many medical students learn about the condition only while training to treat pediatric patients, he said.

Few patients can travel to specialized clinics like Skotkos program in Boston. To help those who cant, he founded an online service, Down Syndrome Clinic to You, which helps families and medical practitioners understand the complications and possible treatments. Email Sign-Up

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If They Say It Hurts, I Listen

Charlotte Woodward, who has Down syndrome, is a prominent advocate for improved care. She counts herself among the tens of thousands of adults with the condition who likely would have died years ago without proper treatment. Woodward, 33, of Fairfax, Virginia, had four heart surgeries as a child and then a heart transplant in her 20s.

Woodward, who is an education program associate for the National Down Syndrome Society, has campaigned to end discrimination against people with disabilities who need organ transplants.

She said her primary care doctor is excellent. But she has felt treated like a child by other health care providers, who have spoken to her parents instead of to her during appointments.

She said many general-practice doctors seem to have little knowledge about adults with Down syndrome. Thats something that should change, she said. It shouldnt just be pediatricians that are aware of these things.

Woodward said adults with the condition should not be expected to seek care at programs housed in childrens hospitals. She said the country should set up more specialized clinics and finance more research into health problems that affect people with disabilities as they age. This is really an issue of civil rights, she said.

Advocates and clinicians say its crucial for health care providers to communicate as much as possible with patients who have disabilities. That can lead to long appointments, said Brian Chicoine, a family practice physician who leads the Adult Down Syndrome Center of Advocate Aurora Health in Park Ridge, Illinois, near Chicago.

Its very important to us that we include the individuals with Down syndrome in their care, he said. If youre doing that, you have to take your time. You have to explain things. You have to let them process. You have to let them answer. All of that takes ore time.

Time costs money, which Peterson believes is why many hospital systems dont set up specialized clinics like the ones she and Chicoine run.

Petersons methodical approach was evident as she saw new patients on a recent afternoon at her Kansas City clinic. She often spends an hour on each initial appointment, speaking directly to patients and giving them a chance to share their thoughts, even if their vocabularies are limited.

Her patients that day included Christopher Yeo, 44, who lives 100 miles away in the small town of Hartford, Kansas. Yeo had become unable to swallow solid food, and hed lost 45 pounds over about 1 years. He complained to his mother, Mandi Nance, that something tickled in his chest.

During his exam, he lifted his shirt for Peterson, revealing the scar where hed had heart surgery as a baby. He grimaced, pointed to his chest, and repeatedly said the word gas.

Peterson looked Yeo in the eye as she asked him and his mother about his discomfort. Nurse practitioner Moya Peterson speaks to patient Christopher Yeo, of Hartford, Kansas. Peterson leads an unusual clinic for adults with Down syndrome, which is housed at the University of Kansas Health System in Kansas City.(Tony Leys / KFF Health News)

The nurse practitioner takes seriously any such complaints from her patients. If they say it hurts, I listen, she said. Theyre not going to tell you about it until it hurts bad.

Yeos mother had taken him to a cardiologist and other specialists, but none had determined what was wrong.

Peterson asked numerous questions. When does Yeos discomfort seem to crop up? Could it be related to what he eats? How is his sleep? What are his stools like?

After his appointment, Peterson referred Yeo to a cardiologist who specializes in adults with congenital heart problems. She ordered a swallowing test, in which Yeo would drink a special liquid that appears on scans as it goes down. And she recommended a test for Celiac disease, an autoimmune disorder that interferes with digestion and is common in people with Down syndrome. No one had previously told Nance about the risk.

Nance, who is a registered nurse, said afterward that she has no idea what the future holds for their family. But she was struck by the patience and attention Peterson and other clinic staff members gave to her son. Such treatment is rare, she said. I feel like its a godsend. I do, she said. I feel like its an answered prayer.

Like a Person, and Not a Condition

Peterson serves as the primary care provider for some of her patients with Down syndrome. But for many others, especially those who live far away, she is someone to consult when complications arise. Thats how the Lesmeisters use her clinic.

Mom Marilyn is optimistic Sammee can live a fulfilling life in their community for years to come. Some people have said I need to put her in a home. And Im like, What do you mean? And they say, You know ? a home, she said. Im like, Shes in a home. Our home.

Sammees sister, who lives in Texas, has agreed to take her in when their parents become too old to care for her.

Marilyns voice cracked with emotion as she expressed her gratitude for the help they have received and her hopes for Sammees future.

I just want her to be taken care of and loved like I love her, she said. I want her to be taken care of like a person, and not a condition. Marilyn Lesmeister and her daughter Samantha Sammee Lesmeister.(Christopher Smith for KFF Health News)

Tony Leys: tleys@kff.org, @tonyleys Related Topics Health Industry Mental Health Rural Health States Disabilities Kansas Missouri Virginia Contact Us Submit a Story Tip

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UK

Rhianan Rudd: How mother’s boyfriend played ‘significant’ role in radicalising youngest UK girl to face terror charges

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June 10, 2025

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Rhianan Rudd: How mother's boyfriend played 'significant' role in radicalising youngest UK girl to face terror charges

Rhianan Rudd, who took her own life at the age of 16, was the youngest girl in the UK to be charged with terrorist offences. 

The inquest into her death, which concluded today, revealed shocking details about her radicalisation by two American white supremacists, one of whom was her mother’s boyfriend, who the coroner said “played a material role in her radicalisation”.

Rhianan gouged a swastika into her forehead, downloaded a bomb-making manual and told her mother she planned to blow up a synagogue.

Investigated by anti-terrorism police and MI5, charges against her were later dropped, but five month later on 19 May 2022, she was found dead in her shower in a children’s home in Nottinghamshire. Hours earlier she had posted on Instagram: “I’m delving into madness.”

The evidence heard in Chesterfield Coroner’s Court from police, social services and even an MI5 operative, raised questions over the state’s part in her death – and whether, despite her obvious radicalisation, this vulnerable, autistic girl should have been treated with more care by the authorities.

Judge Alexia Durran said: “I’m not satisfied, on the balance of probabilities, Rhianan intended to take her own life. Rhianan’s death… was the result of a self-inflicted act but it is not possible to ascertain her intention.

“Rhianan was known, to family and professionals, to be vulnerable, to have autistic traits and have a history of self-harm.”

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The coroner added: “I find she was highly affected by her arrest and was concerned about being sent to prison.”

It was not known what Rhianan was told by her legal team when the charges were dropped but this may have had a “psychological impact” on her, the coroner said.

Rhianan Rudd. Pic: Family handout
Image:
Rhianan Rudd. Pic: Family handout

In an interview released at the verdict, Rhianan’s mother Emily Carter said her daughter “should never have been charged”, that she was failed by those investigating her, including MI5 and counter terrorism police, as well as being let down by mental health services and those caring for her at the home.

This was the most complex of cases, set at a time when our security services are seeing a growing number of children being arrested and charged for terrorist offences, while parents often seem oblivious to the radicalising material they are consuming online in their bedrooms.

Ms Durham’s ruling reflected this complexity, finding that while there were some failings the actions of the police and MI5 were “reasonable and proportionate”.

The coroner concluded today that she was satisfied that missed opportunities in her case were “not systemic”.

Judge Alexia Durran said: “In the circumstances I do not consider I should make a prevention of future deaths report.”

At the same she was unequivocal about the “significant” role played by two extremists in radicalising her.

It was her mother’s former boyfriend, an American she’d befriended though a US pen-pal prison scheme, who first introduced Rhianan to far-right ideology.

Dax Mallaburn had been part of a white supremacist prison gang in the US and subsequently came to the UK to live with Rhianan’s mother in September 2017, a year after she’d been to visit him in the US.

In the autumn of 2019, Rhianan alleged that he had touched her inappropriately but later withdrew the allegation and, after a social services assessment, Mr Mallaburn returned to the family home.

Ms Carter says: “In hindsight, he was a bad person but I never saw him talking Nazi stuff with her.”

Before Rhianan was arrested, Mr Mallaburn’s relationship with her mother had broken down and he returned to the US and then Mexico. However, during COVID, Rhianan appeared to contact another far-right extremist, Christopher Cook, and began an online relationship with him.

Cook, who was roughly 18 and living in Ohio, shared far-right texts with Rhianan along with a bomb-making manual, and during this time she became fixated with Adolf Hitler.

Previously unissued photo dated 21/05/25 of Emily Carter, the mother of Rhianan Rudd, who died aged 16. In the 18 months before she died, Rh
Image:
Emily Carter, the mother of Rhianan Rudd

Cook’s lawyer, Peter Scranton, says he too was radicalised online, and he came up with a plan to blow up power stations in the US, for which he was eventually arrested in August 2020, and in February 2022 he pleaded guilty to terrorism offences.

Cook, who was a misfit at school, suffering from “severe depression” according to his lawyer and was “essentially lashing out” as he tried to form a group to carry out his plan.

Mr Scranton told Sky News, “It was white nationalism, and they had this idea, and I don’t know why anyone would feel this way or how they thought it would work, that if they tore down the government and started over they could create a new United States of America that could look like the image that they would want – a white nationalist image.”

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Mr Scranton says Cook told him he didn’t radicalise Rhianan, and it was the former boyfriend, Dax Mallaburn, who’d initially got her into neo-Nazi ideology. However, the coroner found Cook was “a significant radicaliser of Rhianan” at a time when she was “isolated and unsupervised”.

Ms Carter says Rhianan was interested in German history because she was doing it at school and Cook was able to “pull her in”, to racial hatred and antisemitism. She says she didn’t know what was happening, despite having parental controls on Rhianan’s devices. She said: “I could hear her talking to people on there and I’d say who are you talking to and she’d say – just someone from school – and in fact I found out it wasn’t at all.

“When this person she was talking to disappeared, that’s when she sat down on my lap like a baby and cried. She told me this guy Chris had left her, and she was totally in love with him – then she came down and told me she had downloaded a bomb manual and I was like ‘Oh my god, what have you been doing’.”

Ms Carter decided to contact Prevent – a national program in the UK designed to stop individuals from becoming terrorists or supporting terrorism

She says: “I thought putting her in a deradicalisation programme would be a fairly easy undo ‘brain pick’, But it wasn’t until the police turned up that I thought ‘hang on a minute this is a lot deeper than I actually thought it was at first’.”

Ms Carter and her lawyers have argued that the police were heavy-handed, that there should have been a psychological assessment before she was even questioned over terrorism offences.

“There were 19 police officers to arrest a 5ft 1, 14-year-old girl who weighs seven stone. It was over the top,” says Ms Carter.

Once Rhianan was charged, the deradicalisation work under Prevent was put on hold. Ms Carter thinks this was a mistake.

She says: “Leaving her with her own thoughts throughout the entire time of going through the police interviews and everything else – the deradicalisation would have changed the way she was seeing things – I believe she would have been able to handle it all so much better.”

The coroner described the police arrest and interview as “necessary and conducted appropriately” and that, while ceasing the Prevent intervention was an “unfortunate consequence” of the police investigation, it was “an appropriate step”.

During police interviews, Rhianan described being coerced and groomed, including sexually, and having sent explicit images of herself to Cook.

Lawyers representing the family say police and MI5 knew she was the victim of child sexual exploitation but failed to refer her to the relevant body – the National Referral Mechanism.

It was only after a social worker made the referral, that she was identified as a child victim and then the charges were dropped, by which time she had been subject to investigation and prosecution for 15 months.

The coroner agreed that there was a “systems failure” due to a lack of training both within the police and the Derbyshire council who both had had “significant information” that she was a potential victim of modern slavery.

However, she also said it “was impossible to know” whether this would have led to the CPS dropping their charges sooner, “nor that if had more than minimal impact on Rhianan’s death”.

Ms Carter says if she’d been treated differently “she’d be troubled, but I do think she’d still be alive”.

Rhianan’s family say the security services knew her vulnerabilities and that she had a tendency to self-harm, but they failed to take this into account.

Ms Carter said: “I admit my mistakes and I want the organisations to admit their mistakes. There were failings and they need to admit them.”

This ruling however found that the state did not play a role in Rhianan’s death under article 2 of the European Convention on Human Rights.

For the most part, her vulnerabilities were known and taken into consideration. It does however show how extremists will exploit children with mental health problems, young people who are struggling with life who may be a danger to society, but also a risk to themselves.

Counter Terrorism Policing said it offered “sincere condolences to Rhianan’s family and loved ones for their terrible loss”.

Assistant Chief Constable Di Coulson, speaking on behalf of Counter Terrorism Policing in the East Midlands (CTPEM) and Derbyshire Constabulary, said: “This was a complex case involving a very vulnerable young person, who had been subjected to radicalisation.

“Rhianan’s tragic death was clearly devastating for her family. It was felt profoundly by the officers directly involved, but also across Counter Terrorism Policing as a whole.

“Rhianan’s case was a stark moment for our management of the growing numbers of children and young people in our casework – so often presenting vulnerability as well as risk and threat to the public.

“Since Rhianan’s death, we continue to work alongside our partners to evolve the way we approach cases involving children and, where feasible, attempt to rehabilitate and deradicalise, rather than investigate and convict.

“We welcome the findings of the Chief Coroner today, and while we have already made substantial improvements to the way we manage these cases, we will carefully review the findings and make any further changes in order to improve our protection of the public against terrorism.”

Anyone feeling emotionally distressed or suicidal can call Samaritans for help on 116 123 or email jo@samaritans.org in the UK. In the US, call the Samaritans branch in your area or 1 (800) 273-TALK

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UK

The five considerable problems with the chancellor’s U-turn on winter fuel payments

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3 hours ago

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June 10, 2025

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The five considerable problems with the chancellor's U-turn on winter fuel payments

There are considerable problems with the winter fuel payment U-turn, but perhaps the political argument in favour outweighs them all?

First, Rachel Reeves has executed the plan without working out how to pay for it.

This, for an iron chancellor, is a wound that opponents won’t let her forget. A summer of speculation about tax rises is not a summer anyone looks forward to.

Politics latest: Treasury minister challenged over reason for U-turn

Second, the fig leaf that she and Treasury ministers are using is an improvement in economic conditions.

If you were being polite, you’d say this is contested.

The OBR halved growth this year and the OECD downgraded UK forecasts, albeit only by a little, last week.

More on Rachel Reeves

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The claim that interest rates are coming down ignores that their descent is slower because of government decisions of the last six months.

Third, the question immediately becomes, what next?

Why not personal independent payments (PIP) and the two-child benefit cap?

At this stage, it would feel like a climbdown if they did not back down over those.

But then, what will the markets – already policing this closely – make of it, and could they punish the government?

Fourth, this is aggravating divisions in the Parliamentary Labour Party: the soft left Compass group and ministers like Torsten Bell pushing bigger spending arguments.

Those MPs in Tory-facing seats who rely on arguments that Labour can be trusted with the public finances are worried.

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Fifth, this has created a firm division between No 10 (the PM) and No 11 (the Chancellor).

No 10 is now conscious that it does not have enough independent advice about the market reaction to economic policies and is seeking to correct.

Others, I am told, are just critical of the chancellor’s U-turn – for she wobbled first.

Read more:
UK to become ‘AI maker not taker’, says PM
How much cash will Reeves give each department?

Given the litany of arguments against, why has it happened?

Because the hope is this maxi U-turn lances the boil, removes a significant source of pensioners’ anger and brings back Labour voters, a price they calculate worth paying, whatever the fiscal cost.

We wait to see who is right.

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Technology

Apple’s WWDC underwhelms on AI, but software gets biggest facelift in over a decade

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3 hours ago

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June 9, 2025

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Apple's WWDC underwhelms on AI, but software gets biggest facelift in over a decade

Apple CEO Tim Cook speaks during the Apple Worldwide Developers Conference (WWDC) on June 09, 2025 in Cupertino, California.

Justin Sullivan | Getty Images News | Getty Images

Apple‘s annual developer conference on Monday lacked the splashy announcement that fans are used to seeing at WWDC. There was nothing like the Vision Pro reveal from 2023 or the Apple Intelligence announcement last year.

But there was an important software update that, later this year, will change the way all of Apple’s major devices, from iPhones and Mac laptops to Vision Pro virtual reality headsets, will look. It’s a new design language that runs across all of Apple’s operating systems. The company is calling it Liquid Glass.

For Apple, it’s the first significant redesign of its iPhone operating system since 2013, when the company announced iOS7. Apple says the lock screen will look like it’s made out of glass. Buttons will turn into little glass pills, fluidly sliding over glass rails. And there are new animations, including when answering a phone call.

The unveiling underwhelmed Wall Street, which sent the stock down 1.2% on the day. Investors are pressuring Apple to make big changes to its artificial intelligence strategy, pushing it to match the frontier models capabilities of rivals such as Google and OpenAI.

“Many of the AI features announced were more incremental in our view, and already available through competitor applications,” UBS analyst David Vogt wrote in a note on Monday. He has the equivalent of a hold rating on the stock.

Last year, Apple announced Apple Intelligence, its response to ChatGPT, complete with a demo of a “more personal” Siri that could intelligently parse through emails and messages to figure out the best time to make a restaurant reservation. Apple delayed the feature in March, had to pull ads that depicted it, and provided no update on timing on Monday.

“This work needed more time to meet our high quality bar,” Apple software chief Craig Federighi said on Monday. He restated the company’s “the coming year” timeline.

Liquid glass design

Apple’s focus at WWDC was on providing new features and animations across its software that are “delightful,” in CEO Tim Cook’s words.

The new design language is heavy on transparent buttons, sliders, and other interaction elements. Users will be able to spot it as soon as they upgrade their phones to the new iOS, which will be available for beta testing this summer.

Apple announces liquid glass during the Apple Worldwide Developers Conference (WWDC) on June 9, 2025 in Cupertino, California.

Justin Sullivan | Getty Images

Instead of hard, sharp corners in rectangular windows, Apple’s new design language has curved corners that match the device.

One reason Apple gave for rolling out the update now is that its computers and chips have become powerful enough to handle it. Apple said that its new look was directly inspired by the look of VisionOS, the company’s software for Vision Pro.

“Apple Silicon has become dramatically more powerful — enabling software, materials and experiences we once could only dream of,” Federighi said in a recorded video.

As with many Apple announcements, reactions are all over the map. Some people on social media were excited while others compared the update to the look of Windows Vista, which was released in 2007.

While Apple didn’t make many significant changes to the Siri experience, the company did introduce a few significant improvements and changes to its AI capabilities.

Apple also expanded its integration with OpenAI’s ChatGPT, integrating its image generation capabilities into an app that previously only used Apple’s technology.

When a user takes a screenshot on an iPhone, a new button will send the image to ChatGPT, which can summarize blocks of text in the image, or even decipher what’s happening.

One major improvement Apple is rolling out is in language translation.

During a phone call between two people who don’t speak the same language, the phone app can translate a sentence after it’s spoken and use an AI-generated voice to speak to the other party in the their language. Apple says the feature uses AI processed on the iPhone and doesn’t require a connection to a server.

New numbers

In some corners of the Apple fan universe, the most notable announcement on Monday may involve a simple number.

Since 2007, Apple had introduced a new version of its iOS every year. By 2024, Apple was on iOS 18. It’s a meaningful number for users who want to know if they have the latest Apple features, and some 82% of users with recent iPhones had upgraded to iOS 18 within a year.

Now, Apple is naming its operating systems for the iPhone and other devices after the year that they’ll be available for use by most consumers. In this case, it’s 2026.

In September, users will upgrade to iOS 26. Apple also has iPadOS 26, WatchOS 26, tvOS 26 and Vision OS 26.

The name change will simplify how to refer to the various operating systems, which had gotten confusing given that each device was on a different generation. It also keeps the pressure on Apple to keep rolling out an update every year, or else the number will make it clear that its software is outdated.

WATCH: Little information from Apple on Siri AI upgrade

Little information from Apple on Siri AI upgrade 'disappointing', says Maxim's Tom Forte

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