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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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Feeble and inept – prison release fiasco is yet another political crisis

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Feeble and inept - prison release fiasco is yet another political crisis

The charitable view of the latest prison release blunder that has plunged the government into another political crisis is that it’s extremely bad luck rather than an act of incompetence by ministers. 

But the more we learn about the shocking details of what happened and what looks like a cynical attempt at a cover-up by the hapless David Lammy, the more the blame can be laid at the government’s door.

Politics latest: Badenoch slams ‘shambles of a government’

Critics of the justice secretary and deputy prime minister, standing in for Sir Keir Starmer at PMQs, claim this sorry episode reveals his pomposity, inability to think on his feet and a tendency to blame others for a fiasco.

And it’s not as if the accidental prison releases that have shocked the nation and outraged public opinion in recent weeks are the only fiascos on the government’s watch. For example:

The asylum seeker deported on the government’s one in, one out deal with France who then returned to the UK on a small boat across the Channel was another case of a policy that critics claim isn’t working.

The furore over the tax rises expected in Rachel Reeves’ budget can be attributed to what now looks like a strategic error in promising no rises in income, VAT or national insurance in Labour’s election manifesto.

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The chancellor’s failure to apply for a local authority licence to rent out her home in London’s leafy suburbs revealed a lack of judgment on her part, on top of her dodgy CV about her jobs before becoming an MP.

Angela Rayner’s careless approach to stamp duty requirements on her luxury beachfront flat that forced her resignation triggered a botched reshuffle that caused resentment among ministers and MPs.

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Lammy refuses to say if more prisoners mistakenly released

The appointment of Peter Mandelson as US ambassador – described by ministers as “a risk worth taking” – despite his links to paedophile Jeffrey Epstein, always looked like an accident waiting to happen.

The list goes on.

But Mr Lammy’s handling of the Wandsworth prison releases (another was revealed hours after PMQs) has been chaotic, shifty and made a bad situation worse. It couldn’t have come at a worse time, of course, when he was deputising at PMQs.

We now know that he was told about the release blunder overnight. His excuse for dodging James Cartlidge’s questions in PMQs about another release was that information was still emerging and the case was complicated.

Feeble! And inept.

Read more:
Manhunt for two prisoners freed in error
How many prisoners are released by mistake?

A tougher law and order minister in the mould of David Blunkett, John Reid, Michael Howard or – dare one say – his predecessor as justice secretary, Shabana Mahmood – would have demanded the full facts on his desk first thing in the morning.

Was Mr Lammy guilty of a deliberate cover-up or was he just incompetent, with no grip over his department and the increasingly accident-prone prison service? Either is bad and damaging for the government’s credibility.

We also know that the Conservatives found out about the mistaken release 15 minutes before PMQs. Tory stand-in Mr Cartlidge doggedly asked him no fewer than five times if there had been any more accidental releases.

Mr Lammy floundered and, in what was a very bad look, lost his temper. That was a bad mistake. His tactics backfired spectacularly.

When Mr Cartlidge rose at the end of PMQs and told MPs another prisoner had indeed been mistakenly released, Mr Lammy fled the chamber in indecent haste, ignoring the Speaker’s offer of a response.

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Analysis: Did Lammy walk into a trap?

It was, or course, Angela Rayner’s resignation over her stamp duty blunder that brought about Mr Lammy’s elevation to deputy prime minister. And that, of course, was a sop to compensate him for losing the Foreign Office brief.

His critics claim Mr Lammy was over-promoted when he was appointed shadow foreign secretary. But then he did co-chair Sir Keir’s 2020 leadership campaign. And, like the PM, he’s a barrister.

Elected MP for Tottenham in a by-election in 2000, he held a number of junior and middle-ranking ministerial posts under Tony Blair and Gordon Brown.

And in a humiliating appearance on TV’s Celebrity Mastermind in 2009, he said in one answer during a general knowledge round that Henry VII acceded the English throne after the death of Henry VIII.

But the minister now dubbed “Calamity Lammy” by his Tory opponent Robert Jenrick isn’t the only minister guilty of blunders. Top of that list must be the prime minister himself.

Sir Keir makes the appointments, controls policy from No 10, overrules ministers and – when it comes to the economy – is, after all, the First Lord of the Treasury.

Yes, some of the government’s political problems are down to bad luck. But not all, by any means.

To misquote Oscar Wilde, the most famous prisoner held in another prison, Reading Gaol: “To lose one prisoner may be regarded as a misfortune. To lose two looks like carelessness.”

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Maccabi boss hits out at ‘blatant falsehoods’ peddled about their fans – but admits work to do on racism

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Maccabi boss hits out at 'blatant falsehoods' peddled about their fans - but admits work to do on racism

The chief executive of Israeli football team Maccabi Tel Aviv has denounced “falsehoods” and hatred being spewed about their supporters, leading to them being banned from Aston Villa, while accepting there is work to do to eradicate racism in the fan base.

Jack Angelides told Sky News there is a need for “toning down the incitement” ahead of tomorrow’s Europa League match at Villa Park, which will see more than 700 police officers deployed with protests anticipated outside by Palestinian and Israeli groups.

Mr Angelides revealed the club has not been given a specific reason for Birmingham authorities banning their supporters – a decision which the government pushed to be overturned before Maccabi said they would reject any fan allocation granted in any case.

“We feared for the safety of our fans and it’s a huge responsibility,” Mr Angelides said in an interview at Villa Park.

“[With] a lot of incitement, we didn’t feel comfortable in taking that allocation and that’s a sad day in football because things like that shouldn’t happen.

“People have the right to freedom of speech, absolutely, but people don’t have the right to spew hatred.”

Birmingham’s Safety Advisory Group (SAG) announced last month that visiting fans will be barred from attending the game at Villa Park amid public safety concerns.

West Midlands Police also classified the Europa League match “high risk” and said the ban was necessary due to “current intelligence and previous incidents”.

That was a reference to Maccabi’s match at Ajax last November when their fans were attacked by locals, leading to five convictions.

No Maccabi fans were prosecuted. They were seen tearing down Palestinian flags and chanting anti-Arab abuse.

'I've seen people coming up with all sorts of stories about our fans' - Jack Angelides
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‘I’ve seen people coming up with all sorts of stories about our fans’ – Jack Angelides

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Dog that killed nine-month-old baby was XL bully

Mr Angelides said: “We have not been given a clear reason [for the ban], but I have seen people coming up with all sorts of stories of our fans, especially in Amsterdam, where there was, what the Amsterdam authorities themselves classified as ‘a Jew hunt’, being portrayed as organised fighters, soldiers, etc, etc.

“It’s just blatant falsehoods, and people who say those things know that they’re false and shame on them.”

Pro-Palestinian supporters protest ahead of Aston Villa's UEFA Europa League match. Pic: Reuters
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Pro-Palestinian supporters protest ahead of Aston Villa’s UEFA Europa League match. Pic: Reuters

Mr Angelides believes the decision has been kept private to leave open for people to form a conclusion and characterise his club as racist.

Ayoub Khan, the independent pro-Gaza MP whose constituency covers Villa Park, called for the ban because the club has “hooligans who have a long history of violence and vile racism”.

“Any club that tries to suggest that they don’t have any issues, whatever that may be, it’s untrue,” Mr Angelides said.

“We know we’ve got a long road ahead. There are elements in the club that are not in line with our values, our morals, and we do expend a lot of energy and have been for many, many years in trying to… eradicate that.

“But to malign thousands and thousands of good fans with the actions of a few, it’s a dangerous game because I think that’s something that is not conducive to toning down the incitement that’s actually going on now. It’s manipulation to my mind.”

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Maccabi Tel Aviv FC ruled it wouldn’t sell fans any tickets

Football focus

Mr Angelides did not discuss whether there was fear among the players going into a potentially hostile environment.

“We have Jewish players; we have Christian players; we have Muslim players – we’re a club that’s quite diverse,” he said.

“There is an understandable excitement of playing. They’re aware, … the last two years have taken a toll on Israeli society because of what’s been going on. So they’re very aware of the situation, but I think they’re prepared to focus on their football.”

The game is going ahead, after moves in European football to ban Israeli teams over the war in Gaza faded, as a peace deal was implemented.

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‘I’m desperately sorry’: Axel Rudakubana’s father accepts ‘share of the responsibility’ after Southport attack

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'I'm desperately sorry': Axel Rudakubana's father accepts 'share of the responsibility' after Southport attack

Axel Rudakubana’s father has said he is “desperately sorry” for failing to challenge his son’s violent behaviour over the years before the Southport attack.

Alphonse Rudakubana told a public inquiry he was “frightened” of his son, who once poured a bottle of oil over him and said: “Trust me, I will kill you.”

He said Axel’s behaviour deteriorated in a “short period of time” until he was expelled from the Range High School in Formby, Merseyside, in October 2019 after admitting to carrying knives.

Two months later, he returned to attack a pupil with a hockey stick, while armed with a knife and was arrested and made subject to a referral order, aged 13.

Tributes left near the scene of the attack. File pic: PA
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Tributes left near the scene of the attack. File pic: PA

Alphonse said his son would have “random” violent outbursts, attacking him up to twice a day, but he became “conditioned to his behaviour” and “allowed him to abuse and assault me”.

“I’m ashamed of my response,” he said, adding his fear “prevented him from doing things a parent would normally do”, such as restricting internet activity and ordering weapons online.

“This had catastrophic consequences for which I’m desperately sorry,” he said.

“I accept I bear my share of the responsibility and that by not challenging his behaviour he was allowed to acquire dangerous weapons and view inappropriate content online.”

He said he and his wife Laetitia Muzayire “couldn’t set boundaries, we couldn’t say anything because it would lead to outbursts, and he was effectively out of control”. He also said he feared his son would be taken away.

Three children were killed in the attack last year. Pic: PA
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Three children were killed in the attack last year. Pic: PA

Axel was referred three times to the government’s anti-terror programme Prevent between 2019 and 2021 because of concerns over his fixation with violence, including school shootings.

The criminal investigation showed he had images of mutilated bodies, torture, cartoons mocking Islam, antisemitic material, Nazi mass graves and material demeaning to women and girls, on his devices.

His father told the inquiry he was not aware of the material but admitted: “I had lost control, I had no authority as a father.”

“I was reduced to somebody who feeds him, does all he asks,” he said, adding: “I had no power to stop him from accessing anything he wanted online.”

The inquiry heard Axel received a delivery of a machete in June 2023 but his father said he didn’t confront him “because he would fly into a rage”.

Flowers and tributes to the victims. File pic: PA
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Flowers and tributes to the victims. File pic: PA

Knife packaging found in washing machine after Rudakubana left home

His brother Dion said Axel would order packages online with money he made through his genealogy business which he feared “had something bad in them”.

He told the inquiry the last time his brother left home alone before the Southport attack was when he was caught carrying a knife on a bus in March 2022, telling police he was “going out to stab someone to get rid of his social media accounts”.

Dion said it would have seemed “logical” to Axel, adding: “It wouldn’t have been anyone specific, just a random person.”

A week before the mass stabbing, armed with a knife, Axel booked a taxi to his old school and tried to get in, but was stopped by his father.

(L-R) Bebe King, Elsie Dot Stancombe and Alice da Silva Aguiar. Pic: Merseyside Police
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(L-R) Bebe King, Elsie Dot Stancombe and Alice da Silva Aguiar. Pic: Merseyside Police

Axel Rudakubana, was aged 17 when he murdered Elsie Dot Stancombe, seven, Bebe King, six, and Alice da Silva Aguiar, nine, in a knife attack on a Taylor Swift-themed dance class on 29 July last year.

Read more:
Rudakubana was ‘building up to something’
Rudakubana judged as posing no risk to others
The missed chances to stop Rudakubana

Eight other children, who cannot be identified because of their age, were also injured, along with yoga instructor Leanne Lucas, who was leading the dance class, and businessman John Hayes, who was one of the first people on the scene and tackled the killer.

Dion described the moment his brother left the family home that morning wearing a face mask and with the sleeves of his hoodie pulled down.

He told the inquiry how his mother showed him the knife packaging she found in the washing machine shortly after.

But his parents “didn’t seem alarmed” and his mother went back to bed so he took “comfort” from this and there was “no discussion about contacting the police”.

“We did not believe he intended to harm anyone” and thought if he was carrying a knife it was to “protect himself, not to harm others”, Dion said.

Asked about why Axel may have targeted the Taylor Swift-themed dance class, Dion suggested because “children are very valuable to society” and it would “hurt society very badly” if children were to be harmed.

The inquiry, which is being held at Liverpool Town Hall, continues on Thursday.

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