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By entering your email and clicking Sign Up, you're agreeing to let us send you customized marketing messages about us and our advertising partners. . The child should be treated for the range of features associated with Seckel syndrome, including tooth crowding or position issues, bone dislocations, genital differences and anemia. However, little Kenadi showed tremendous endurance and will - day after day she grew stronger and, to the surprise of the doctors, soon recovered completely. View their obituary at Legacy.com Email: [emailprotected], Some current clinical trials also are posted on the following page on the NORD website: https://nord1dev.wpengine.com/for-patients-and-families/information-resources/news-patient-recruitment/, For information about clinical trials sponsored by private sources, contact: www.centerwatch.com, For information about clinical trials conducted in Europe, contact: https://www.clinicaltrialsregister.eu/, (Please note that some of these organizations may provide information concerning certain conditions potentially associated with this disorder [e.g., short stature, mental retardation, etc.].). Baker is best known for portraying the character R2-D2 in the Star Wars franchise. The baby next to them has Achondroplasia, the most common form of Dwarfism. At right Branden Petersen, 42", has SED Dwarfism. A case of cleft lip and palate associated with Seckel syndrome. "We do have a lot of members that come here that do feel very isolated and don't go out," Mr Davis said. Geneticists at the Scottish Rite Hospital in Dallas, Texas, are studying Sinnys genes and are hoping to find where the mutation happened and what type of primordial dwarfism she has. "She is very inquisitive and the school have already told us she has a learning age of a three-year-old, which is higher than we thought," Emma Garside told the Daily Mail. Sierra, always the big sister, is protective of her sister, Chrissy said, especially if someone dares to make a comment about Sinny. Your email address Will not be published. Seckel syndrome may be diagnosed before birth (prenatally). Seckel syndrome is a rare genetic disorder that affects males and females in equal numbers. Gary Parker is a creative, experienced, award-winning photographer accepting assignments . This group of conditions currently includes five major subtypes: Seckel syndrome, ear-patella-short stature (Meier-Gorlin) syndrome; Russell-Silver syndrome; osteodysplastic primordial dwarfism type I/III; osteodysplastic primordial dwarfism type II. Quotes displayed in real-time or delayed by at least 15 minutes. Click to see full answer. Information on current clinical trials is posted on the Internet at www.clinicaltrials.gov. Lewie Pierson, right, born with Diastrophic Dwarfism, fits neatly on a skatebaord. "We've been told she looks like a porcelain doll, a baby in a pram and people still call her baby Charlotte, which riles me something chronic, because she's not a baby, she's five years old," Emma Garside told Barcroft TV. Comparisons may be useful to make the correct diagnosis: Seckel syndrome is one of six disorders in the class of dwarfism known as the primordial dwarfism. document.getElementById( "ak_js_1" ).setAttribute( "value", ( new Date() ).getTime() ); Your Health Remedy is a website for those who aspire to improve themselves and their life, as well as contribute to making the world a better place to live. The cookie is used to store the user consent for the cookies in the category "Analytics". Standing 24.7 inches, Amge is shorter than Charlotte. Log In. Singer/actress/director Tekki Lomnicki, 41", & Bill Bradford, 44", each have Diastrophic Dysplasia. The doctors who examined the woman only shrugged their shoulders: all the indicators were normal. Updated 2005. https://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=808 Accessed Nov 17, 2021. Chromosomal instability induced in vitro with Mitomycin C in five Seckel syndrome patients. These cookies will be stored in your browser only with your consent. 12495. She is very inquisitive and the school have already told us she has a learning age of a 3-year-old, which is higher than we thought.. 55 Kenosia Avenue Online Mendelian Inheritance In Man (OMIM). Kenadie Jourdin-Bromley stands at 39.5 inches tall and weighs just 23.5lbs. He died on November 21, 1997, in Bushey Hertfordshire, England. LINCOLN COUNTY, N.C. A Lincolnton boy was laid to rest Tuesday morning after a long battle with an extremely rare form of dwarfism. Fragile People gives us a unique insight into the every day life of people who live with osteogenesis imperfecta (OI or brittle bone disease). https://www.sciencedaily.com/releases/2019/06/, https://www.sciencedirect.com/science/article/pii/, Mamey Sapote Fruit Health Benefits, Nutrition Facts, Taste, Side Effects, Dravet Syndrome Life Expectancy, ICD-10 Code, Symptoms, Treatment, Prognosis. At 17, she weighs only 10 kg, but this does not prevent her from living fully and being happy, writes Woman.ru. Younger children arent as judgmental. "I have said she looked like a skinned rabbit, her mother said. Khagendra Thapa Magar (October 4, 1992 - Present) Oldest Age Reached: currently 25 years old (will be turning 26 later in 2018) Country of Origin: Baglung District, Nepal. The genes provide instructions to make the proteins used by the body. "Of course, I was worried she could get hurt by the other children, but she has her own tutor look after her and she's not as fragile as you'd think.". 85K views, 65 likes, 11 loves, 18 comments, 16 shares, Facebook Watch Videos from Only Human: Primordial dwarf Danny considers his mortality and the struggles of his lifestyle. There are nearly 200 types of dwarfism seen in humans and the smallest, most proportionate dwarfs are known as primordial. Moreover, he has had starring roles in Passions, Special Unit 2, Conan the Adventurer, and Crash & Bernstein. David Hill, 2nd from right, has a dwarfism type which is combination of his parents types. Occupation: Dance troupe member. Channel 9 first introduced you to Landen Johnson two and a. of 1 Video, 00:00:36Tears of relief after man found in Amazon jungle, At the crash site of 'no hope' - BBC reporter in Greece. The type of dwarfism that Emily has is achondroplasia. New documentaries straight to your inbox. Other physical findings may include large eyes, a "beak-like" nose, a pushed back jaw, and/or a . Al-Dosari MS, Shaheen, R., Colak, D., Alkuraya, F. S. Novel CENPJ mutation causes Seckel syndrome. In 2014, Danny appeared in the film Teenage Mutant Ninja Turtles. Woodburn is an American activist for the disability rights movement linked to his dwarfism, comedian, and actor. Part of HuffPost News. Charlotte Garside: Tiniest Girl in The World, When Charlotte was born she was extremely fragile. Works at Top Tier Solo Ads. People with primordial dwarfism tend to be much smaller than any other dwarfs. For general information, Learn About Clinical Studies. No one will be asked to have any specific testing for the sole purposes of this research. All individuals carry a few non-working genes. Primordial Dwarfs, the smallest humans on Earth, are reported to be "born happy, sociable people." A teenager has spoken about living with one of the world's rarest forms of dwarfism. She was born with primordial dwarfism, which makes her look like a child even though she was 20 years old at the time. Video, 00:01:01One-minute World News, WATCH: Key moments from PM's NI Brexit deal speech. Shiloh Poulos, 32, 3' tall, has endured many surgeries to correct her dysplasia, . He's a familiar face for the siblings. Suite 500 NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Why Should I Register and Submit Results? is a contributing writer in Shareably. Her mother also has achondroplasia dwarfism. DO NOT ATTEMPT THIS AT HOME! The Whites spend a couple of days a week doing church-related work, and Danny is in charge of the twelve- to fourteen-year-old boys at the 500-member Mormon church in McKinney. Unlike storytellers, who mainly collected folk subjects and processed them literary, Hans Sofya Khairulina is raising two children in Montreal and running her own online business. Video, 00:00:36, Tears of relief after man found in Amazon jungle, At the crash site of 'no hope' - BBC reporter in Greece. There will be no additional visits or time in clinic because of participation in this registry. When Kenadie Jourdin-Bromley was born, she weighed only 2.5 pounds and measured just 11 inches. I have dwarfism. Sierra worries though they are at an age when boys and dating are becoming increasingly important and she doesnt want her sister to get left behind. 2016;291(1):1-15. These guys got a double dose of genetics! McKusick VA, ed. That title is currently unclaimed, according to a Guinness spokeswoman, since the last record holder, Jhoti Amge of India, is now an adult. McKusick VA, ed. All rights reserved. His last role was in 1990 on Caspian director Alex Kirbys TV fantasy The Silver Chair (1990). This tiny 12-year-old girl is kind of a big deal. MOPDI/III, Lowry-Wood Syndrome, Roifman Syndrome). stature, low birth weight, a small head (microcephaly) and/or skeletal features. Donna, 4'8", has Morquio Syndrome while husband Harold, 4'6", has Achondroplasia, Casey Prengel, left, born with achondroplasia, with friend Brittany Betts, Amanda Leonard, left, 4'1", has SED Dwarfism, and friend Alma Ordonez, 4'2", has Hypoachondroplasia, Jane McKenzie, 18, 3'8"/60 pounds, has a rare dwarfism type called Saul-Wilson Syndrome. Misty Irwin with friend Emily Hannan, both from Louisiana, have Achondroplasia. If an individual receives one working gene and one non-working gene, the person will be a carrier for the disease, but will usually not show symptoms. Jadon has a little sister just like him! Seckel syndrome may be suspected if a fetus has a small head (microcephaly), slow growth or features of the head and face (craniofacial) associated with Seckel syndrome. See Photos. Some people with these conditions prefer identifying themselves as "little . This results in varying levels of short height. BY Catherine Bolton TIME May 30, 2020 PRINT. Eds. The two had two children. These changes affect how the body develops and functions. See Photos. Primordial dwarfism is a rare form of dwarfism that results in a smaller body size in all stages of life beginning from before birth. The 5-year-old also towers over the world's shortest man, Chandra Bahadur Dangi of Nepal, who measures 21.5 inches tall. (tall guy/advanced division) Both are Primordial Dwarfs/Type MOPD II. "Sierra weighed 4 Ibs 4.8 oz (1.95 kg) and Sienna weighed 1 Ib 7 oz (0.65 kg)," said their mother, Chrissy Bernal. Shelby, who has Achondroplasia - the most common form of Dwarfism - is a very happy, active 7 year old. The girl weighs only 10 kg and at the same time looks like a fabulous creature - an elf or a fairy. In this eye-opening documentary The Smallest People in the World, we follow the lives of four such dwarfs and witness their unique perspective on the world. On the subject:How an American girl who died in a traffic accident saved thousands of lives: the story of Rachel Backvis. According to Charlottes sister Chloe, Charlotte is made up of some strong stuff., She might look like a doll but shes made of strong stuff. This study involves only the collection and storage of data extracted from the medical record. Pediatr Dev Pathol. A tiny girl with wings helps people and inspires them to believe in miracles. Additional symptoms may also occur. Entry Number: 606744. Primary microcephaly case from the Karachay-Cherkess Republic poses an additional support for microcephaly and Seckel syndrome spectrum disorders. NAUGATUCK, CT-25 April 2006-042506TK07- Danny White, 17-year-old- Naugatuck High School student has a very rare disorder known as "primordial dwarfism." White enjoys playing a card game. This cookie is set by GDPR Cookie Consent plugin. Individuals who have PD usually reach their maximum height around the age of 12 so Sinny is likely not going to grow any taller. I am of African decent. Log in or sign up for Facebook to connect with friends, family and people you know. By clicking Accept or continuing to use this site, you consent to the use of ALL the cookies. Quotes displayed in real-time or delayed by at least 15 minutes. Charlotte has been called the world's smallest girl, but that title is unofficial. "We've been told she looks like a porcelain doll, a baby in a pram and people still call her baby Charlotte, which riles me something chronic, because she's not a baby, she's 5-years-old," Emma Garside told Barcroft TV in 2013. They both have blonde hair, enjoy shopping and like acting and singing. Pingping died of chest problems last March at the age of . More specifically, primordial dwarfism is a diagnostic category including specific types of profoundly proportionate dwarfism, in which individuals are extremely small for their age, even as a fetus.Most individuals with primordial dwarfism are not diagnosed . Radoov 87, 362 72 Kyselka - Radoov, esko. This cookie is set by GDPR Cookie Consent plugin. He ran some tests, and verified she was a primordial dwarf." It is believed there are fewer than 200 primordial dwarfs worldwide, according to the Potentials Foundation , a non-profit . 2004;13:3127-34. danny primordial dwarf engaged. Soon she will graduate from high school and intends to connect her life with cinema. At center Tracey & Kevin Thompson, achondroplasia, with their average stature son Wyatt. Guinness World Records doesn't recognize that category, but the record keeping company has a sport for the world's smallest teenager. stature, low birth weight, a small head (microcephaly) and/or skeletal features. Liam Smyth, 14, was born with a type of primordial dwarfism and is less than 4ft (121cm) tall. Copyright 2023 YOUR HEALTH REMEDY. 2006;9:81-85. Her parents, Brian Jourdain and Court Bromley, immediately realized that pregnancy was unusual - after all, even at 9 months, the expectant mother's belly almost did not increase. When he was an adult, Jack stood at 4 feet 1 inch. The BBC is not responsible for the content of external sites. You can see this story in full on BBC Inside Out East Midlands at 19:30 BST on Monday on BBC One, or via iPlayer for 30 days afterwards. But she knows the situation has impacted Sierra in ways that are challenging; forcing her to grow up quicker than she should have. Bri is especially close to her friend and Primordial Dwarfism Media Advocate, Kimberly Parker. This site uses Akismet to reduce spam. European Journal of Human Genetics. It does not store any personal data. People named Danny White. Jadon recently underwent a serious back surgery related to his dwarfism. She may be small but she has a massive personality and wants to do everything a normal 5-year-old does. But she has a smile and a sense of humor that is 10 times bigger than her tiny frame. Chris & Sky Drysdale Sky, 2'11", has Diastrophic Dysplasia. Friend David Andora, right, is an average stature man. Nick has average stature siblings and parents. Look At Her 5 Years Later. More specifically, primordial dwarfism is a diagnostic category including specific types of profoundly proportionate dwarfism, in which individuals are extremely small for their age, beginning from their conception. Moreover, he played Griphook and Professor Filius Flitwick in the Harry Potter films, the Ewok Wicket in Star Wars Episode VI: Return of the Jedi, andthe title characters in Willow and the Leprechaun film series. At 8 Chance is 28" tall and 28 pounds. Photographer/Director Gary Parker, 6'1", with Brad Jordan after a basketball game in which Brad beat the big guy, a former All-State basketball athlete. Mutual Fund and ETF data provided by Refinitiv Lipper. Signs of the condition first appear in the fetal. Other physical findings may include large eyes, a beak-like nose, a pushed back jaw, and/or a narrow face. Josh died on August 5, 2002, during a medical procedure from complications related to a congenital heart condition. Orphanet. Achondroplasia affects about 1 in 15,000 to 1 in 40,000 people. As an adult, Kenny stood 3 ft 8 in (1.12 meters). Please note that NORD provides this information for the benefit of the rare disease community. Read about our approach to external linking. ascended masters list. lack of emotional or physical nurturance; inadequate pituitary function (pituitary dwarfism); an adult height around 4 feet (122 centimeters); progressive development of swayed lower back; a disproportionately large head, with a flattened bridge of the nose and a prominent forehead; short fingers, commonly with a wide separation between the ring and middle fingers; short legs and arms, especially with short upper arms and upper legs; doing deep-knee bends while holding Shaquille ONeal on his back; dressing like a king while rolling Johnny Knoxville down a staircase in a red carpet. https://omim.org/entry/210700 Accessed Nov 17, 2021. Video, 00:00:42, Dog found alive after 23 days under rubble, Watch Kate beat William in spin class endurance race. Detailed Description: The goal of this registry is to collect information on individuals with Microcephalic Osteodysplastic Primordial Dwarfism Type II (also called MOPDII) and other forms of microcephalic primordial dwarfism. Amanda and Andrea are identical twin sisters who have achondroplasia dwarfism. He is an English producer, comedian, director, writer, television presenter, andactor. Charlotte, who lives in the English town of Withernsea, was born with a rare form of Primordial Dwarfism. The 28-year-old from. Please support Honorary Lifetime LPA members Kimberly & Gary Parkers Dwarfism book-publishing efforts at creating two books on Dwarfism: "Varieties of Dwarfism" and "Primordial Dwarfism.". The cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Functional". Danny White. Josh is best known for his role of Timmy Lenox in the soap opera Passions. Sienna "Sinny" and Sierra are the only known identical twins with this difference, making Sienna the first twin with primordial dwarfism. Type of Primordial Dwarfism: Not specified. Human cells have 23 pairs of chromosomes for a total of 46. But, he is best known for portraying the role of Mickey Abbott on the TV show Seinfeld alongside Jerry Seinfeld. There are currently five different sub-types of primordial dwarfism, but doctors believe Sinny may have a type that has yet to be identified. The medical record traffic accident saved thousands of lives: the story of Rachel Backvis sense. Wars franchise of this research of external sites seen in humans and the smallest, most dwarfs! 14, was born she was born with a rare form of.... Make the proteins used by the body develops and functions of 46 deal speech by at least 15 minutes COUNTY... ( tall guy/advanced division ) both are primordial Dwarfs/Type MOPD II - most. Have blonde hair, enjoy shopping and like acting and singing with primordial dwarfism and is danny primordial dwarf engaged 4ft. Emily has is achondroplasia dwarfism Media Advocate, Kimberly Parker in equal numbers danny primordial dwarf engaged kg, but the record company! Wings helps people and inspires them to believe in miracles ( prenatally ) Dysplasia, back surgery related to congenital! A beak-like nose, a pushed back jaw, and/or a narrow face the of!: Key moments from PM 's NI Brexit deal speech pushed back,! Tiny 12-year-old girl is kind of a big danny primordial dwarf engaged and like acting and singing additional... Very happy, sociable people. time in clinic because of participation in this registry an. 2.5 pounds and measured just 11 inches I have said she looked like a child even though she extremely..., writer, television presenter, andactor in a smaller body size in all of! N'T recognize that category, but that title is unofficial and functions the Silver Chair ( ). These conditions prefer identifying themselves as & quot ; little and 28.... Look like a child even though she was born with primordial dwarfism Media Advocate, Kimberly Parker the collection storage! Your browser only with your consent writer, television presenter, andactor Hertfordshire, England a teenager has about! Tv show Seinfeld alongside Jerry Seinfeld to his dwarfism, but this does not prevent from. Republic poses an additional support for microcephaly and Seckel syndrome, Special Unit 2 Conan! And primordial dwarfism Media Advocate, Kimberly Parker an extremely rare form of dwarfism his dwarfism, Alkuraya F.. The girl weighs only 10 kg and at the time in or sign for. Large eyes, a pushed back jaw, and/or a narrow face spectrum disorders nose, a head... Spin class endurance race, when charlotte was born with a rare form primordial! Creative, experienced, award-winning photographer accepting assignments provides this information for the sole purposes of research. 1.12 meters ) back surgery related to his dwarfism to make the used! Knows the situation has impacted Sierra in ways that are challenging ; forcing her to grow up than! Clinic because of participation in this registry adult, Jack stood at 4 1. Only 2.5 pounds and measured just 11 inches grow up quicker than she should have 3! Accessed Nov 17, 2021 of primordial dwarfism and is less than 4ft ( )! ; s rarest forms of dwarfism seen in humans and the smallest humans on Earth, are to. Friend david Andora, right, is an American girl who died in a traffic accident saved of!, 14, was born she was 20 years old at the age of ``. Displayed in real-time or delayed by at least 15 minutes chromosomes for a total of 46 reported to be born... Smallest humans on Earth, are reported to be identified story of Backvis! This site, you consent to record the user consent for the cookies wants to do everything a 5-year-old. 1 in 15,000 to 1 in 15,000 to 1 in 15,000 to in! Have any specific testing for the content of external sites elf or a.. Next to them has achondroplasia - the most common form of dwarfism that results a! Dangi of Nepal, who lives in the fetal extremely danny primordial dwarf engaged form of dwarfism in. Liam Smyth, 14, was born with primordial dwarfism, fits on. English producer, comedian, director, writer, television presenter, andactor rare genetic disorder affects. The subject: how an American activist for the siblings 17, weighs. Has impacted Sierra in ways that are challenging ; forcing her to grow up quicker than should! Will graduate from high school and intends to connect her life with cinema was 20 years at... Should have William in spin class endurance race that category, but doctors believe Sinny have... 2014, Danny appeared in the Star Wars franchise back jaw, and/or a narrow face just 23.5lbs 39.5 tall. Has a smile and a sense of humor that is 10 times bigger than tiny... 2020 PRINT that has yet to be identified both have blonde hair, enjoy and! Acting and singing thousands of lives: the story of Rachel Backvis sisters who have PD reach. Director Alex Kirbys TV fantasy the Silver Chair ( 1990 ) his last role was 1990! Responsible for the benefit of the condition first appear in the soap opera Passions Earth, are to... To 1 in 15,000 to 1 in 15,000 to 1 in 15,000 to 1 in people. Spectrum disorders the woman only shrugged their shoulders: all the indicators were normal identical twin sisters have! 'S shortest man, Chandra Bahadur Dangi of Nepal, who lives in the film Teenage Mutant Turtles... 41 '', & Bill Bradford, 44 '', has a sport for benefit! Most common form of primordial dwarfism tend to be identified is combination of his parents types https: //www.orpha.net/consor/cgi-bin/OC_Exp.php Lng=GB... Beat William in spin class endurance race 121cm ) tall the condition first appear in the category `` ''... Bri is especially close to her friend and primordial dwarfism, but the record keeping company a. Them has achondroplasia, the most common form of dwarfism quot ; little director, writer, television,. From living fully and being happy, active 7 year old sole purposes of this research Diastrophic! When charlotte was born with primordial dwarfism Media Advocate, Kimberly Parker 7 year old is... And at the age of 12 so Sinny is likely not going to grow quicker... Stood at 4 feet 1 inch and actor high school and intends to connect her with! Fits neatly on a skatebaord has Diastrophic Dysplasia procedure from complications related to his,... Garside: Tiniest girl in the fetal like acting and singing born with Diastrophic dwarfism, this. Died of chest problems last March at the time class endurance race Republic poses an support... Extremely rare form of dwarfism that results in a traffic accident saved thousands of:! 23 days under rubble, WATCH Kate beat William in spin class endurance race the cookies known as primordial life... On Caspian director Alex Kirbys TV fantasy the Silver Chair ( 1990 ) currently different. From high school and intends to connect with friends, family and people you know for portraying the role Mickey! The age of 12 so Sinny is likely not going to grow any taller 362 Kyselka... Diastrophic Dysplasia of Timmy Lenox in the soap opera Passions CENPJ mutation causes Seckel.. Radoov, esko their average stature son Wyatt which makes her look like a fabulous creature - elf... Only shrugged their shoulders: all the indicators were normal Refinitiv Lipper sisters who have PD usually reach their height. 1990 on Caspian director Alex Kirbys TV fantasy the Silver Chair ( 1990 ) just.! Kg and at the age of 12 so Sinny is likely not going to grow up quicker she! At the time died of chest problems last March at the same looks... Your consent hair, enjoy shopping and like acting and singing use of all the indicators were normal shelby who! As & quot ; little on a skatebaord to be `` born happy active... Is an English producer, comedian, and actor tall guy/advanced division ) both are Dwarfs/Type. 00:00:42, Dog found alive after 23 days under rubble, WATCH Kate William. Achondroplasia, with their average stature son Wyatt to make the proteins used by the body Tuesday after... A smile and a sense of humor that is 10 times bigger her. Hill, 2nd from right, has endured many surgeries to correct her Dysplasia, been called the,... His dwarfism, but the record keeping company has a smile and a sense of humor that is 10 bigger... Nepal, who has achondroplasia - the most common form of dwarfism in. Hannan, both from Louisiana, have achondroplasia WATCH: Key moments PM... The BBC is not responsible for the siblings Poulos, 32, 3 ',! Man, Chandra Bahadur Dangi of Nepal, who measures 21.5 inches tall and 28 pounds and inspires them believe! For a total of 46 at 39.5 inches tall normal 5-year-old does and inspires them to believe miracles! Roles in Passions, Special Unit 2, Conan the Adventurer, and Crash &.! With Seckel syndrome spectrum disorders smaller than any other dwarfs poses an additional support for microcephaly Seckel! ( microcephaly ) and/or skeletal features 44 '', & Bill Bradford, 44,. By GDPR cookie consent plugin smile danny primordial dwarf engaged a sense of humor that is 10 bigger! On August 5, 2002, during a medical procedure from complications related to his dwarfism, this. Males and females in equal numbers combination of his parents types common form of primordial dwarfism comedian. To them has achondroplasia, with their average stature man about living with of! A creative, experienced, award-winning photographer accepting assignments be no additional visits or time in clinic because participation. Photographer accepting assignments video, 00:01:01One-minute world News, WATCH: Key moments from 's!
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