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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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Business

Donald Trump announces sweeping global trade tariffs – including 10% on UK imports

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Donald Trump announces sweeping global trade tariffs - including 10% on UK imports

Donald Trump has announced a 10% trade tariff on all imports from the UK – as he unleashed sweeping tariffs across the globe.

Speaking at a White House event entitled “Make America Wealthy Again”, the president held up a chart detailing the worst offenders – which also showed the new tariffs the US would be imposing.

“This is Liberation Day,” he told a cheering audience of supporters, while hitting out at foreign “cheaters”.

Follow live: Trump tariffs latest

He claimed “trillions” of dollars from the “reciprocal” levies he was imposing on others’ trade barriers would provide relief for the US taxpayer and restore US jobs and factories.

Mr Trump said the US has been “looted, pillaged, raped, plundered” by other nations.

President Donald Trump holds a signed executive order during an event to announce new tariffs in the Rose Garden of the White House, Wednesday, April 2, 2025, in Washington. (AP Photo/Evan Vucci)
Image:
Pic: AP

His first tariff announcement was a 25% duty on all car imports from midnight – 5am on Thursday, UK time.

Mr Trump confirmed the European Union would face a 20% reciprocal tariff on all other imports. China’s rate was set at 34%.

The UK’s rate of 10% was perhaps a shot across the bows over the country’s 20% VAT rate, though the president’s board suggested a 10% tariff imbalance between the two nations.

It was also confirmed that further US tariffs were planned on some individual sectors including semiconductors, pharmaceuticals and critical mineral imports.

Please use Chrome browser for a more accessible video player

Trump’s tariffs explained

The ramping up of duties promises to be painful for the global economy. Tariffs on steel and aluminium are already in effect.

The UK government signalled there would be no immediate retaliation.

Business and Trade Secretary Jonathan Reynolds said: “We will always act in the best interests of UK businesses and consumers. That’s why, throughout the last few weeks, the government has been fully focused on negotiating an economic deal with the United States that strengthens our existing fair and balanced trading relationship.

“The US is our closest ally, so our approach is to remain calm and committed to doing this deal, which we hope will mitigate the impact of what has been announced today.

“We have a range of tools at our disposal and we will not hesitate to act. We will continue to engage with UK businesses including on their assessment of the impact of any further steps we take.

“Nobody wants a trade war and our intention remains to secure a deal. But nothing is off the table and the government will do everything necessary to defend the UK’s national interest.”

Please use Chrome browser for a more accessible video player

Who showed up for Trump’s tariff address?

The EU has pledged to retaliate, which is a problem for Northern Ireland.

Should that scenario play out, the region faces the prospect of rising prices because all its imports are tied to EU rules under post-Brexit trading arrangements.

It means US goods shipped to Northern Ireland would be subject to the EU’s reprisals.

The impact of a trade war would be expected to be widely negative, with tit-for-tat tariffs risking job losses, a ramping up of prices and cooling of global trade.

Research for the Institute for Public Policy Research has suggested more than 25,000 direct jobs in the UK car manufacturing industry alone could be at risk from the tariffs on car exports to the US.

The Society of Motor Manufacturers and Traders (SMMT) had said the tariff costs could not be absorbed by manufacturers and may lead to a review of output.

The tariffs now on UK exports pose a big risk to growth and the so-called headroom Chancellor Rachel Reeves was forced to restore to the public finances at the spring statement, risking further spending cuts or tax rises ahead to meet her fiscal rules.

Read more:
What do Trump’s tariffs mean for the UK?
The rewards and risks for US as trade war intensifies

A member of the Office for Budget Responsibility (OBR), David Miles, told MPs on Tuesday that US tariffs at 20% or 25% maintained on the UK for five years would “knock out all the headroom the government currently has”.

But he added that a “very limited tariff war” that the UK stays out of could be “mildly positive”.

He said: “There’s a bit of trade that will get diverted to the UK, and some of the exports from China, for example, that would have gone to the US, they’ll be looking for a home for them in the rest of the world.

“And stuff would be available in the UK a bit cheaper than otherwise would have been. So there is one, not central scenario at all, which is very, very mildly potentially positive to the UK. All the other ones which involve the UK facing tariffs are negative, and they’re negative to very different extents.”

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Politics

‘My lawyers are ready’ for questions about corruption claims, ex-minister tells Sky News

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'My lawyers are ready' for questions about corruption claims, ex-minister tells Sky News

Tulip Siddiq has told Sky News her “lawyers are ready” to handle any formal questions about allegations she is involved in corruption in Bangladesh.

Asked whether she regrets apparent links with the Bangladeshi Awami League political party, Ms Siddiq said “why don’t you look at my legal letter and see if I have any questions to answer… [the Bangladeshi authorities] have not once contacted me and I’m waiting to hear from them”.

The London MP resigned as a Treasury minister in January after being named in several corruption inquiries in Bangladesh.

In her first public comments since leaving government, Ms Siddiq said “there’s been allegations for months on end and no one has contacted me”.

Last month, the interim leader of Bangladesh told Sky News the MP had “wealth left behind” in the country “and should be made responsible”.

Lawyers acting for Ms Siddiq wrote to the Bangladeshi Anti Corruption Commission (ACC) several weeks ago saying the allegations were “false and vexatious”.

The letter said the ACC must put questions to Ms Siddiq “by no later than 25 March 2025” or “we shall presume that there are no legitimate questions to answer”.

More on Bangladesh

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Staff from the NCA visited Bangladesh as part of initial work to support the interim government in the country.

In a post online today, the former minister said the deadline had expired and the authorities had not replied.

Sky News has approached the Bangladeshi government for comment.

The allegations against Ms Siddiq are focused on links to her aunt Sheikh Hasina – who served as the prime minister of Bangladesh for 20 years.

Ms Hasina was forced to flee the country in August following weeks of deadly protests.

She is accused of becoming an autocrat, with politically-motivated arrests, extra-judicial killings and other abuses allegedly happening on her watch. Hasina claims it’s all a political witch hunt.

Electrocuted on their genitals and mouths sewn up: Inside Bangladesh’s ‘death squad’ jails

Ms Siddiq was found to have lived in several London properties that had links back to the Awami League political party that her aunt still leads.

She referred herself to the prime minister’s standards adviser Sir Laurie Magnus who said he had “not identified evidence of improprieties” but added it was “regrettable” Ms Siddiq had not been more alert to the “potential reputational risks” of the ties to her aunt.

Ms Siddiq said continuing in her role would be “a distraction” for the government but insisted she had done nothing wrong.

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World

Donald Trump announces sweeping global trade tariffs – including 10% on UK imports

Published

on

By

Donald Trump announces sweeping global trade tariffs - including 10% on UK imports

Donald Trump has announced a 10% trade tariff on all imports from the UK – as he unleashed sweeping tariffs across the globe.

Speaking at a White House event entitled “Make America Wealthy Again”, the president held up a chart detailing the worst offenders – which also showed the new tariffs the US would be imposing.

“This is Liberation Day,” he told a cheering audience of supporters, while hitting out at foreign “cheaters”.

Follow live: Trump tariffs latest

He claimed “trillions” of dollars from the “reciprocal” levies he was imposing on others’ trade barriers would provide relief for the US taxpayer and restore US jobs and factories.

Mr Trump said the US has been “looted, pillaged, raped, plundered” by other nations.

President Donald Trump holds a signed executive order during an event to announce new tariffs in the Rose Garden of the White House, Wednesday, April 2, 2025, in Washington. (AP Photo/Evan Vucci)
Image:
Pic: AP

His first tariff announcement was a 25% duty on all car imports from midnight – 5am on Thursday, UK time.

Mr Trump confirmed the European Union would face a 20% reciprocal tariff on all other imports. China’s rate was set at 34%.

The UK’s rate of 10% was perhaps a shot across the bows over the country’s 20% VAT rate, though the president’s board suggested a 10% tariff imbalance between the two nations.

It was also confirmed that further US tariffs were planned on some individual sectors including semiconductors, pharmaceuticals and critical mineral imports.

Please use Chrome browser for a more accessible video player

Trump’s tariffs explained

The ramping up of duties promises to be painful for the global economy. Tariffs on steel and aluminium are already in effect.

The UK government signalled there would be no immediate retaliation.

Business and Trade Secretary Jonathan Reynolds said: “We will always act in the best interests of UK businesses and consumers. That’s why, throughout the last few weeks, the government has been fully focused on negotiating an economic deal with the United States that strengthens our existing fair and balanced trading relationship.

“The US is our closest ally, so our approach is to remain calm and committed to doing this deal, which we hope will mitigate the impact of what has been announced today.

“We have a range of tools at our disposal and we will not hesitate to act. We will continue to engage with UK businesses including on their assessment of the impact of any further steps we take.

“Nobody wants a trade war and our intention remains to secure a deal. But nothing is off the table and the government will do everything necessary to defend the UK’s national interest.”

Please use Chrome browser for a more accessible video player

Who showed up for Trump’s tariff address?

The EU has pledged to retaliate, which is a problem for Northern Ireland.

Should that scenario play out, the region faces the prospect of rising prices because all its imports are tied to EU rules under post-Brexit trading arrangements.

It means US goods shipped to Northern Ireland would be subject to the EU’s reprisals.

The impact of a trade war would be expected to be widely negative, with tit-for-tat tariffs risking job losses, a ramping up of prices and cooling of global trade.

Research for the Institute for Public Policy Research has suggested more than 25,000 direct jobs in the UK car manufacturing industry alone could be at risk from the tariffs on car exports to the US.

The Society of Motor Manufacturers and Traders (SMMT) had said the tariff costs could not be absorbed by manufacturers and may lead to a review of output.

The tariffs now on UK exports pose a big risk to growth and the so-called headroom Chancellor Rachel Reeves was forced to restore to the public finances at the spring statement, risking further spending cuts or tax rises ahead to meet her fiscal rules.

Read more:
What do Trump’s tariffs mean for the UK?
The rewards and risks for US as trade war intensifies

A member of the Office for Budget Responsibility (OBR), David Miles, told MPs on Tuesday that US tariffs at 20% or 25% maintained on the UK for five years would “knock out all the headroom the government currently has”.

But he added that a “very limited tariff war” that the UK stays out of could be “mildly positive”.

He said: “There’s a bit of trade that will get diverted to the UK, and some of the exports from China, for example, that would have gone to the US, they’ll be looking for a home for them in the rest of the world.

“And stuff would be available in the UK a bit cheaper than otherwise would have been. So there is one, not central scenario at all, which is very, very mildly potentially positive to the UK. All the other ones which involve the UK facing tariffs are negative, and they’re negative to very different extents.”

Continue Reading

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