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adminMONTROSE, 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
Virginia Giuffre, who accused Prince Andrew of sexual assault, has died, her family says
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April 26, 2025By
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Virginia Giuffre, who accused Prince Andrew of sexual assault, has died aged 41.
In a statement to Sky’s US partner network NBC News on Friday, her family said she took her own life in the Perth suburb of Neergabby, Australia, where she had been living for several years.
“It is with utterly broken hearts that we announce that Virginia passed away last night at her farm in Western Australia,” her family said.
“She lost her life to suicide, after being a lifelong victim of sexual abuse and sex trafficking.
“Virginia was a fierce warrior in the fight against sexual abuse and sex trafficking. She was the light that lifted so many survivors.
“In the end, the toll of abuse is so heavy that it became unbearable for Virginia to handle its weight.”

Pic: AP
Police said emergency services received reports of an unresponsive woman at a property in Neergabby on Friday night.
“Police and St John Western Australia attended and provided emergency first aid. Sadly, the 41-year-old woman was declared deceased at the scene,” a police spokeswoman said.
“The death is being investigated by Major Crime detectives; early indication is the death is not suspicious.”
Sexual assault claims

Prince Andrew has denied all claims of wrongdoing. File pic: Reuters
Ms Giuffre sued the Duke of York for sexual abuse in August 2021, saying Andrew had sex with her when she was 17 and had been trafficked by his friend, the billionaire paedophile Jeffrey Epstein.
The duke has repeatedly denied the claims, and he has not been charged with any criminal offences.
In March 2022, it was announced Ms Giuffre and Andrew had reached an out-of-court settlement – believed to include a “substantial donation to Ms Giuffre’s charity in support of victims’ rights”.
She stuck by her version of events until the end
Of the many dozens of victims of Jeffrey Epstein, it was Virginia Giuffre who became the most high-profile.
She was among the loudest and most compelling voices, urging criminal charges to be brought against Epstein, waving her right to anonymity in 2015.
She told how he and Ghislaine Maxwell groomed her and “passed around like a platter of fruit” to be used by rich and powerful men.
But her name and face became known around the world after she accused Prince Andrew of sexually abusing her when she was 17 years old.
The picture of her together with the prince and Maxwell at the top of a staircase, his hand around her waist, is the defining image of the whole scandal.
Prince Andrew said he had no memory of the occasion. But Giuffre stuck by her version of events until the end.
‘An incredible champion’
Sigrid McCawley, Ms Giuffre’s attorney, said in a statement that she “was much more than a client to me; she was a dear friend and an incredible champion for other victims”.
“Her courage pushed me to fight harder, and her strength was awe-inspiring,” she said. “The world has lost an amazing human being today.”
“Rest in peace, my sweet angel,” she added.

Listen to The World with Richard Engel and Yalda Hakim every Wednesday
Dini von Mueffling, Ms Giuffre’s representative, also said that “Virginia was one of the most extraordinary human beings I have ever had the honour to know”.
“Deeply loving, wise, and funny, she was a beacon to other survivors and victims,” she added. “She adored her children and many animals.
“She was always more concerned with me than with herself. I will miss her beyond words.
“It was the privilege of a lifetime to represent her.”
Ms Giuffre said at the end of March she had four days to live after a car accident, posting on social media that “I’ve gone into kidney renal failure”. She was discharged from hospital eight days later.
Raised mainly in Florida, she said she was abused by a family friend early in life, which led to her living on the streets at times as a teenager.
She said that in 2000, she met Ghislaine Maxwell, a British socialite who was convicted in 2021 on federal sex trafficking and conspiracy charges and was sentenced to 20 years in prison.

Ghislaine Maxwell and Jeffrey Epstein. Pic: US Department of Justice
Ms Giuffre said Maxwell then introduced her to Epstein and hired her as his masseuse, and said she was sex trafficked and sexually abused by him and associates around the world.
‘A survivor’
After meeting her husband in 2002, while taking massage training in Thailand at what she said was Epstein’s behest, she moved to Australia and had a family.
She founded the sex trafficking victims’ advocacy charity SOAR in 2015, and is quoted on its website as saying: “I do this for victims everywhere.
“I am no longer the young and vulnerable girl who could be bullied. I am now a survivor, and nobody can ever take that away from me.”
:: 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.
UK
Who will be at the Pope’s funeral – and who won’t be
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1 hour agoon
April 26, 2025By
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The Pope’s funeral will take place today at St Peter’s Basilica at the Vatican.
A pope’s funeral traditionally brings world leaders together, and some have already revealed they are attending.
Watch full coverage of the Pope’s funeral live on Sky News from 8am
Here’s a look at the list.
The Prince of Wales will attend the funeral of Pope Francis on behalf of the King, Kensington Palace has said.
The King was in Rome with Queen Camilla earlier this month, and met the pontiff at the Vatican.

Pope Francis meets King Charles and Queen Camilla during a private audience at the Vatican on 9 April. Pic: Vatican Media/Reuters
The trip came just a week-and-a-half after Buckingham Palace confirmed the King had been taken to hospital following side effects related to his ongoing cancer treatment.
Number 10 has confirmed the prime minister received an invite and will attend the ceremony.
Speaking on Tuesday, Sir Keir said there had been “an outpouring of grief and love” for the Pope.
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1:10
Sky News inside Vatican
He added: “I think it reflects the high esteem in which he was held, not just by millions and millions of Catholics, but by many others, across the world, myself included.”

Donald Trump and Pope Francis meet at the Vatican in 2017. Pic: Reuters
The US president was one of the first to confirm he would be flying to Rome, adding he would be joined by first lady Melania Trump.
Writing on his social media platform Truth Social on Monday, he said: “Melania and I will be going to the funeral of Pope Francis, in Rome. We look forward to being there!”
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Trump: ‘Pope Francis loved the world’
The Pope had been critical of Mr Trump at times during his tenure.
In January, he said it would be a “disgrace” if the president went ahead with his crackdown on immigration, telling an Italian television station: “It would make the migrants, who have nothing, pay the unpaid bill.
“It doesn’t work. You don’t resolve problems this way.”

Zelenskyy shakes hands with the pontiff in May 2023. Pic: Vatican News/AP
The Ukrainian president, who met the Pope three times, is expected to attend, according to officials in Ukraine.
In his tribute, Mr Zelenskyy said his country was grieving the Pope and recalled how he often prayed for peace in Ukraine.

Pope Francis shakes hands with Emmanuel Macron in December 2024. Pic: Reuters
The French president told local reporters he would be going to the funeral.
In his tribute on Monday, Mr Macron said of the Pope: “In this time of war and brutality, he had a sense for the other, for the most fragile.”

Pope Francis and Javier Milei at the G7 summit in Italy last June. Pic: Reuters
The president of Pope Francis’s native Argentina will attend, despite having launched insults at Francis in recent years.
Before taking office in December 2023, the far-right politician called him “an imbecile, the representative of evil on Earth”.
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Full order of service
‘Unprecedented’ security operation for funeral
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Mr Milei alluded to their “differences” in his tribute to the late Pope, writing: “It is with profound sorrow that I learned this sad morning that Pope Francis, Jorge Bergoglio, passed away today and is now resting in peace.
“Despite differences that seem minor today, having been able to know him in his goodness and wisdom was a true honour for me.”

Lula da Silva and the Pope at the G7 summit last year. Pic: Vatican Media/Reuters
The Brazilian president and first lady Janja Lula da Silva will be at the funeral, the country’s government announced.
Brazil has also declared a seven-day mourning period for the Pope.
“Humanity is today losing a voice of respect and welcome for others,” the president said in his tribute.
“Pope Francis lived and propagated in his daily life the love, tolerance and solidarity that are the basis of Christian
teachings.”

Pope Francis meets Ursula von der Leyen at the Vatican in 2022. Pic: Vatican Media/Reuters
The EU Commission President confirmed she would be attending after calling Francis a worldwide inspiration.
“He inspired millions, far beyond the Catholic Church, with his humility and love so pure for the less fortunate,” she said in her tribute.
Council President Antonio Costa, Parliament President Roberta Metsola are also expected to attend.
Here are some of the other notable attendees:
• Ireland’s taoiseach Micheal Martin
• Spain’s King Felipe and Queen Letizia
• Albanian president Bajram Begaj
• Angola’s president Joao Lourenco
• Austrian president Alexander Van der Bellen
• Bangladesh’s chief adviser and interim leader Muhammad Yunus
• Belgium’s King Philippe and Queen Mathilde, along with prime minister Bart De Wever
• Canada’s governor general Mary Simon
• Cape Verde president Jose Maria Neves
• Croatia’s president Zoran Milanovic
• Cyprian president Nikos Christodoulides
• Czech Republic’s prime minister Petr Fiala
• Democratic Republic of Congo president Felix Tshisekedi
• Dominican Republic’s president Luis Abinader
• East Timor’s president Jose Ramos-Horta
• Ecuador’s president Daniel Noboa
• Estonia’s president Alar Karis
• Finland’s president Alexander Stubb
• Gabon’s president Brice Oligui Nguema
• German president Frank-Walter Steinmeier and outgoing chancellor Olaf Scholz
• Greece’s prime minister Kyriakos Mitsotakis
• Honduras president Xiomara Castro
• Hungary’s president Tamas Sulyok
• Italy’s president Sergio Mattarella and prime minister Giorgia Meloni
• Latvian president Edgars Rinkevics
• Lithuanian president Gitanas Nauseda
• Moldova’s president Maia Sandu
• Netherlands’ prime minister Dick Schoof
• New Zealand’s prime minister Christopher Luxon
• Norway’s Crown Prince Haakon and Crown Princess Mette-Marit
• The Philippines’ president Ferdinand Marcos Jr
• Poland’s president Andrzej Duda
• Portugal’s president Marcelo Rebelo de Sousa and prime minister Luis Montenegro
• Romania’s interim president Ilie Bolojan
• Sweden’s King Carl XVI Gustaf, Queen Silvia and prime minister Ulf Kristersson
• Switzerland’s president Karin Keller-Sutter
Who won’t be there?

Pope Francis walks next to Putin at the Vatican in 2015. Pic: AP
The Russian president will not be attending the funeral, the Kremlin has confirmed.
But the controversial leader paid tribute to the Pope, writing a message to Cardinal Kevin Farrell, who is interim chief of the Catholic Church.
“Please accept my most sincere condolences on the passing of His Holiness Pope Francis,” Mr Putin said.
“Throughout the years of his pontificate, he actively promoted the development of dialogue between the Russian
Orthodox and Roman Catholic churches, as well as constructive cooperation between Russia and the Holy See.”

Pope Francis and Benjamin Netanyahu meet at the Vatican in 2013. Pic: AP
The Israeli prime minister is not expected to attend, with the country’s ambassador Yaron Sideman going instead.
The Jewish state and the Vatican have had strong relations in the past, with Israel sending a presidential delegation to the funeral of Pope John Paul II in 2005, and Pope Francis visiting Israel in 2014.
But their relationship has deteriorated since the start of the war in Gaza.
A month after the conflict started in 2023, a dispute broke out over whether Pope Francis had used the word “genocide” to describe events in Gaza. Palestinians who met with him said he did, but the Vatican said he did not.
The Pope met relatives of Israeli hostages on the same day.
Israeli officials have since lobbied the Vatican to be more forceful in its condemnation of Hamas.
In January, the Pope called the humanitarian situation in Gaza “shameful”, prompting criticism from Rome’s chief rabbi, Riccardo Di Segni, who accused Francis of “selective indignation”.
Rabbi Di Segni says he will be attending the funeral, despite it taking place on the Jewish sabbath.
Is there a seating plan?
The seats are assigned in advance, with the heads of state sitting in French alphabetical order based on their country’s name, rather than on the individual’s.
This applies to everyone apart from the presidents of Italy and Argentina, who get the best seats because the Pope lived in Italy and was an Argentinian native.
UK
Vincent Nichols: British cardinal who will be in the conclave says picking the next pope is ‘intimidating’
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1 hour agoon
April 26, 2025By
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The head of the Catholic Church in England and Wales has told Sky News it’s “intimidating” to be one of those responsible for choosing the next pope.
Vincent Nichols is among four UK cardinals in Rome for the Pope’s funeral on Saturday.
Following the funeral, and after nine days of mourning, cardinals from around the world will gather in the Vatican’s Sistine Chapel to cast their votes, with white smoke announcing to the world when a new pope has been elected.

Cardinal Vincent Nichols speaks to Sky’s Anna Botting
Cardinal Nichols told Sky’s Anna Botting: “I hope nobody goes into this conclave, as it were, with the sole purpose of wanting to win. I think it’s very important that we go in wanting to listen to each other… It has to be together, trying to sense what God wants next. Not just for the church.”
He described the procession that took Pope Francis to lie in state as “the most moving thing I’ve ever attended here”.
Describing the Pope as a “master of the gesture and the phrase”, he also recalled the pontiff’s last journey away from the Vatican.
Cardinal Nichols said Pope Francis had visited the Regina Coeli prison, telling the inmates: “You know, except for the grace of God, it could well have been me … Don’t lose hope, God has you written in his heart.”
More on Liverpool
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‘Pope touched the hearts of millions’
The Pope later told his doctor his last regret was not being able to wash the feet of the prisoners during that visit.
Becoming emotional, he also said the final message he would like to have given Pope Francis is “thank you”.
The 88-year-old died peacefully on Easter Monday, the Vatican confirmed.
Heads of state – including Sir Keir Starmer, Donald Trump and Emmanuel Macron – have all confirmed their attendance at his funeral, which takes place on Saturday at St Peter’s Square.
Prince William will attend on behalf of the King, Kensington Palace has said.
You can watch full coverage of the funeral live on Sky News on Saturday
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1:19
Where will Pope Francis be buried?
Talking about the seating plan at the funeral, Cardinal Nichols said he understood it to be “royalty first, then heads of state, then political leaders”.
Cardinal Nichols explained event would be “exactly the same Catholic rite as everyone else – just on a grander scale”.
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1:52
3D map shows pope’s funeral route
In a break from tradition, Pope Francis will be the first pope in a century to be interred outside the Vatican – and will instead be laid to rest at his favourite church, Santa Maria Maggiore Basilica in Rome’s Esquilino neighbourhood.
He will also be buried in just one simple wooden coffin, instead of the traditional three coffins which are usually used for pontiffs.
Born in Crosby near Liverpool, Cardinal Vincent Nichols hoped to be a lorry driver as a child – but as a teenager reportedly felt the calling to join the priesthood while watching Liverpool FC.
As cardinal, he is known for leading the church’s work tackling human trafficking and modern slavery, for which he received the UN Path to Peace Award.
He was criticised by the UK’s Independent Inquiry into Child Sexual Abuse, which said he “demonstrated a lack of understanding” of the impact of abuse and “seemingly put the reputation of the church first”.
Cardinal Nichols, responding to the findings, previously told Sky News he was “ashamed at what has happened in the context of the Catholic Church” and promised to improve the church’s response.
He has appeared to rule himself out of the running for pope, telling reporters he was “too old, not capable”.
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