Meet the Kids
Welcome to the Progeria family
Many families have created beautiful web and social media sites devoted to their children, giving you insight into their daily lives, and their hopes and dreams for a cure. We hope their stories inspire you to support PRF, so those dreams can come true.
As of July 1, 2022, this is where the 138 children and young adults with Hutchinson-Gilford Progeria Syndrome (HGPS) live, all with a progerin-producing mutation in the LMNA gene; and 65 people in the category of progeroid laminopathy (PL), who have mutations in the lamin pathway but do not produce progerin; in a total of 51 countries.
Life According to Sam
Get to know the children featured in the HBO Documentary Life According to Sam, and many more from around the world!
Most descriptions were first created in July 2015, and most photos were taken in 2013-2015. A round of updates was completed in November of 2019, and most newer photos were taken in 2019. First, updates on Sam, Devin, Megan, Sammy and Zoey, the children featured in the HBO Documentary, Life According to Sam (they were filmed from 2010-2012):
Sam passed away on January 10, 2014. He was 17 years old. The film shows Sam at ages 13 – 15, and we are so grateful that this award-winning documentary will allow the world to know this extraordinary person and the legacy of love, hope and inspiration he gifted to the world. Sam enjoyed many things, including music, comic books, and watching his beloved Boston sports teams play. He attained the highest academic honors, was a percussion section leader in his high school band, and achieved the rank of Eagle Scout in the Boy Scouts of America.
Sam spoke publicly starting at the age of 4 years, shortly after his parents founded The Progeria Research Foundation, including at two TEDx conferences. As of June 2022, his October 2013 talk on his philosophy for a happy life has been viewed over 93 million times, and daily tweets about how his talk has inspired people continue. Sam was interviewed on national television and radio programs, including ABC Primetime and NPR, impressing his audiences with his articulate, witty and intelligent demeanor. Through Life According to Sam and his TedX talk, he continues to inspire all of us at PRF, as well as millions around the world.
During the filming of Life According to Sam, Canada resident Devin Scullion was 14 years old. More than anything, Devin enjoyed flying, and anything to do with airplanes and the mechanics of how they worked. Devin was also a big football fan and loved cheering on the Hamilton Ticats. He had started taking lonafarnib through PRF’s clinical drug trial at age 11. Sadly, Devin passed away on January 22, 2017, at the age of 20. In his mother’s words, “Being part of the trial definitely helped to extend his life; without PRF, we wouldn’t have had him for as long as we did.”
During the filming of Life According to Sam, she was 10 years old. Now, Megan is 22 and has graduated from high school. Megan loves riding horses and enjoys crafting jewelry for all her friends.
Megan was the first child to take the Zokinvy (lonafarnib) drug in June 2007 – it was an historic moment! When schedules allow she comes to Boston for her trial treatments with her friend Meg Waldron. The two girls have been together in Boston for most of their trial visits. Megan and her family want you to know that they have complete faith and trust in all of the researchers and doctors and of course PRF: “But those who hope in the Lord will receive their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31
Sammy is 26 years old and from Italy. His favorite activities include acting, reading, painting, hanging out with his friends, and having parties. Sammy and his friends love to create projects that will impact society in a positive way, like helping people in need or spreading awareness for great causes (check out their work with Sammy Runs Brenta, for example!) In 2014, Sammy was featured in an Italian National Geographic Series, Il Viaggio Di Sammy, which chronicled his dream trip: travelling on Route 66 in the U.S. from Chicago to Los Angeles with his parents, Laura and Amerigo, and friend Riccardo. Sammy’s parents founded the Associazione Italiana Progeria Sammy Basso to raise awareness, fund research and provide support services to Italian families impacted by Progeria. Sammy is a spokesperson at foundation-related meetings, conferences and events. Italians can often see Sammy on TV or hear him on the radio on some of the most popular stations, where he also speaks of Progeria and the foundation’s activities.
He graduated from the University of Padua with a degree in Natural Sciences, and continues to study Molecular Biology. His graduation thesis was focused on an experimental treatment for Progeria. Together with the association activities, he is involved in research on disability in general – which led him to a collaboration with the Italian Government and inspired the Italian Republic President to grant him knighthood!
During filming of Life According to Sam, she was about a year old and now she is 12! She loves school and has lots of friends! Zoey loves to draw, write, be silly, be with her best friends, help her mom cook, and she especially loves gymnastics class!
Zoey also adores music, singing, and dancing. She has 2 older brothers, Aidan and Gavin. They behave like typical siblings – they play together a lot but sometimes argue for no reason.
In July 2013 Zoey began taking lonafarnib as part of the Trial Expansion, and in April 2016, she and her friend Carly were the first to enroll in the new, 2-drug trial. Her family leads PRF’s New Jersey Chapter, Team Zoey, which is helping PRF to raise the funds needed to pay for Zoey and the other new children entering the trial. Follow Zoey on Facebook and Twitter too!
Meg is an accomplished cellist and violinist, high school cross country and track team athlete and published poet and book author. They are a senior at Emerson College and serves as spokesperson for The Progeria Research Foundation, from the perspective of a young adult with Progeria. In this role, Meg focuses on engaging the young adult community around such events as Hats ON for Progeria, sharing ideas on how to impact people through social media, and participating in PRF media outreach.
Alexandra is a happy six-year-old girl who likes going to school, laughing, and playing with her classmates. She loves music and playing instruments, and she’s crazy for dancing! Even outside of dance school, Alexandra dances wherever she hears music – in the car, in the shops, in the supermarket… She also likes swimming and playing at the swimming pool, where people call her “little fish.” At home, she’s always role-playing as a teacher with all her dolls and babies. At night, before sleeping, she adores reading books with her parents and hearing stories of princesses. She has lots of wishes and dreams; one of them, meeting Minnie Mouse, came true last July when she went to EuroDisney (Minnie’s house in Europe) and met her in a private reception where they played, talked, danced, and hugged. Since Alexandra is the only case in Spain, and there were no foundations specific to Progeria in the country, Alexandra’s family decided to create their own – “Asociación Progeria Alexandra Peraut” – as a way to raise awareness and funds for Progeria research. Last September, Alexandra’s parents were challenged to finish the Challenge Madrid Triathlon (full relay) to raise awareness for Progeria and their association and to raise funds for research. Take a look at this video of the family crossing the finish line, and check out their Instagram and Facebook for more information!
Beandri is 16 years old, and from South Africa. She is one of four siblings, with three older brothers who love her very much. Beandri has become a true teenager, with all the different personalities that teenagers have. She loves listening and dancing to Afrikaans music and singing along to her favorite songs. She is in the school choir and enjoys it tremendously. Her family has five Yorkies and one Toy Pomeranian at home – and she loves all of her doggies. Her family also has a Facebook page for her, called “Beandri, our inspiration.” She is a big inspiration to all of us. Like any girl her age, Beandri loves all girly stuff, especially make-up, dresses and looking pretty.
Brennen is a 13-year-old boy from New York. He is very active and loves his dog and his little brother, Owen. Brennen’s family and friends started TEAM BRENNEN to help raise funds and awareness for Progeria, and their small town in upstate NY has rallied around the family. In July 2014, Brennen had his first Progeria Clinical Trial visit in Boston. His mom posted to Facebook how proud she was for the way Brennen handled all the testing! Keep up with this fun little boy and his great team on the Team Brennen Facebook page.
Cam is an active, sports-loving 15-year-old! Cam’s favorites are the color blue, chocolate ice cream, pasta, math, gym, playing sports and video games. His favorite teams are the Pittsburgh Penguins and the Steelers. Cam’s family in the Pittsburgh, Pennsylvania area have created Team Cam, one of our Pennsylvania Chapters. They hold events to raise awareness and funds for Progeria research, including Cam’s Course and HatsON.
Carly-Q, as she is affectionately called by friends and family, is an adorable, unstoppable bundle of energy! Carly enjoys DIY projects, making slime and caring for her numerous baby dolls. She also loves watching and creating YouTube videos.
In 2012, Carly Cares, a 501(c)3 non-profit organization was founded to support progeria families and researchers. Their signature event is held in September called “Carly’s Party – for the Cure!”- an event that gets bigger each year!
Carly attends school and enjoys math. She loves Curious George and the movie SING!. In July 2013, Carly joined the Progeria Drug Trial, coming to Boston to enroll with her friend Zoey and in April 2016, they were the first to enroll in the new, 2-drug trial. Click Here to watch a short video of her with Zoey in Boston. Check out Carly-Q’s Mom on Facebook.
Enzo is an adorable 10-year-old boy from Australia with a beautiful, contagious smile. Enzo loves to build with Legos and is very interested in learning all about the planets and space. He is a full-time student, where math, science, and art are his favorite subjects. He enjoys his time at school with his friends, where he is a popular kid! Enzo loves sports, but he is not strong enough to play with his peers. Instead, he enjoys weekly swimming and dancing lessons. He participates every year in the Glenelg Christmas Pageant and end-of-year concert with Dancers by Donna. He loves to be on the stage! His love for music is increasing each year, and he is planning to take guitar lessons soon. Also, Enzo loves running. He participates each year in the City-to-Bay Fun Run in Adelaide in the 6kms walking group. Watching him cross the finish line every year is priceless. Enzo has built up a community – ‘Team Enzo’ hosts many fundraising activities to support Enzo in his journey with Progeria.
Enzo was one of the youngest children to enroll in PRF’s Clinical Trials, back in 2015. His first visit to Boston was in April of 2015 at age 3. Next, he came in September of 2017, and most recently in September of 2019. Enzo has enrolled in the one-drug trial to continue taking lonafarnib. As parents, Catherina and Percy have learned to live with the fear that anything can happen at any day or any time. On the other hand, having PRF in their lives has given them the hope that instead of enjoying Enzo for only 14 or 15 years, now they can strongly believe they will watch him finish high school, drive a car, and continue his studies. They are hopeful that a cure will be found in the years to come!
Jomar is a 12-year-old boy from the Dominican Republic. He loves Spiderman and Paw Patrol. His favorite places to visit are the zoo and the aquarium, and his favorite food is pizza. He loves to sing and dance, especially to one of his favorite songs, “Vamos a la Playa”. Jomar’s dream in life is to be a race car driver. This September, during his third visit to Boston, Jomar participated in PRF’s 18th Annual International Race for Research. He had an early start to his racing career and was awarded “Star of the Race”!
Kaylee is 18 years old and from Ohio. Her family and friends started PRF’s Ohio Chapter in 2006, and have had tremendous success with its signature event, Kaylee’s Course. They spend a night each summer at their local ice cream shop, Freeze Daddy’s, fundraising for PRF. Kaylee and her brothers enjoy serving ice cream all night, and attendees get to compete for raffle prizes while enjoying some incredible vintage cars. Kaylee is an online influencer, local celebrity, and a very busy girl. Most recently, she’s been invited to speak at Total Package Girl 2019 Leadership Summit in October 2019. Keep up with Kaylee by joining her Facebook Group!
Lindsay is an honest and sarcastic 18 year old girl from Michigan. She is in her high school marching band and enjoys hanging out with her friends when she’s not listening to music, reading, writing, or drawing. Lindsay was featured with Hayley and Kaylee on the 2010 Barbara Walters 20/20 Special ‘7 Going on 70’. To learn more about her yearly event, Miles for Miracles, visit PRF’s Michigan Chapter page. The Michigan Chapter is run by Lindsay’s loving parents, supportive family and friends.
Mateo is 19 years old and from a large city in Argentina that’s just a bit smaller than Boston. He started coming to Boston for the very first Progeria clinical trial, all the way back in 2007! He’s currently in his fourth year of high school and is planning to pursue a career in computer engineering. He loves technology; he is constantly on his cell phone, browsing websites, or playing his favorite game, “Free Fire.” He also likes to play poker and chess.
He doesn’t like to miss weekends with his favorite cousins, Enzo and Agustin (twins), and the group of friends they have in common. Mateo is very loved by all his friends, and by many people in his network who support him on his journey.
Michiel & Amber
Meet Michiel, 24, who loves snowboarding and kart racing, computer games, hanging with his friends, and “The Big Bang Theory”. His 16-year-old sister, Amber, loves to horse around with Michiel, and loves gymnastics, dancing, the color green and and her mobile phone. Read about these very close siblings from Belgium on their multi-lingual site created with love by their parents. Learn through the detailed diary about their experiences living with Progeria, and the life of this wonderful boy and girl who bring so much joy to all who know them. You can also stay in touch with them on Michiel’s Facebook page.
We learned a lot about Michiel and Amber through our first game of “Sibling Showdown”. They did not agree on much, but it was clear that Amber keeps the tidier bedroom and that both siblings dream of travel. The family chose Cambridgeside Galleria Mall for the location of the shoot, which made sense after hearing that one of Amber’s favorite activities is shopping! For a closer look into the lives of Michiel and Amber, check out the 2019 PRF newsletter, featuring a brief interview with the sibling duo.
Nathan & Bennett
Nathan and Bennett are brothers with Progeria who live outside of Philadelphia, PA with their parents, older sister Libby, and dog Ruby. They both have a rare form of Progeria called Mandibuloacral Dysplasia (MAD) and have similar medical conditions to children with classic Progeria. Nathan is 16 and Bennett is 13. Nathan is very cautious, responsible and academically minded. He plays violin, trumpet and loves anything science-related. Bennett is more ‘carefree’ and gets away with a lot because of his charming smile and goofy personality. He loves anything sports related and plays football for hours outside, regardless of the weather! Both are obsessed with Star Wars, Minecraft and of course, their electronic devices! Despite the differences in their ages and personalities, these two are best friends! See their beautiful brotherhood/friendship and meet their family in this heartwarming interview by Special Books for Special Kids. Their family and friends created “Fighting for Their Future”, the Philadelphia, Pennsylvania Chapter for PRF to help raise awareness and funds for Progeria research. We are very excited and happy to work with them on their many events, including their signature, fun event “Make a Splash for Nathan and Bennett”. For more information on this dynamic duo please visit their Facebook Page.
Zach is 15 years old and lives in Lexington, Kentucky in the USA (Go Cats!) Zach loves the color yellow and is addicted to Minecraft videos. He loves traveling, being in the Cub Scouts and listening to classic rock and roll music. Zach excels in math and recess at school. He loves pizza, cheese bread, cheeseburgers and chicken fingers. Zach and his parents were guests (with Carly Q) on The Katie Show in June of 2014. Katie Couric is a devoted supporter of children with Progeria. Katie made Zach’s year by giving him the most awesome gift ever….tickets to his favorite rock band, Queen! Zach’s parents host several fundraisers yearly and formed the Kentucky Chapter of PRF in 2009. Zach appears with NHRA Champion Erica Enders and motorcycle champion Kyle Wyman a Public Service Announcements, and his contagious energy and smile will brighten your day – follow Team Zach Attack and the Kentucky Chapter’s activities.
Zein’s mother, Dina, discovered PRF through Facebook. Zein is the only child in Egypt identified by name and genetically tested for Progeria. He is only 5 years old and just joined the monotherapy trial. In September of 2019, his trip to Boston for the trial was the first time he left his home country of Egypt! Zein likes to spend time with his family, to read books with his older brother, Adam, and to sing and dance. Everyone loves Zein when they meet, because he is so sweet and friendly. Zein brings joy to all of his family and friends. Dina mentions, she is “so proud to have a child like him.”
In Loving Memory…
You may have read about these special children – each of whom has made a very big impact in a very unique way…
Adalia, a teenager from Texas with a personality the size of Texas, too, passed away in January 2022 at the age of 15 years old. She loved to sing, dance and play dress up. She was widely known for her fun videos and special relationship with her mom, Natalia – her 14 million Facebook followers are proof of that!
Claudia, from Portugal, was 23 years old at the time of her passing in November of 2021. Her favorite color was blue, favorite school subject was Foreign Languages, and her favorite food was “Punched” baked potatoes with salted cod (in Portuguese, it is “Batata á murro com Bacalhau”). She also loved music, dancing, and going out with friends. You can check out her Facebook page here!
Hayley, a teenager from England with Progeria who captured the hearts of many, passed away in April, 2015 at the age of 17. Hayley won the prestigious Children of Courage Award and appeared in several documentaries and stories about Progeria. Read about Hayley on this Facebook page and in her books, Old Before My Time, and Young at Heart, about living with Progeria. “My life with progeria is full of happiness and good memories. Deep inside I am no different from anyone. We are all human.”
Josiah, quite the character whose love of baseball had captured the attention of sports fans everywhere, passed away on December 24, 2018 at age 14. Josiah was featured in 2010 and 2017 on ESPN’s E:60, and has inspired many with his courage, including his very favorite player, Ryan Howard of the Philadelphia Phillies. Chosen by ABC as a “Person of the Week” in 2011, Josiah affected people because, as his mom Jennifer says, “He didn’t let his condition stop him. He was placed here to touch people’s lives.” Josiah served as Honorary Bench Coach for the State College Spikes (A – Cardinals) baseball team, earning the 2015 Mitauer “Good Guy” Award for his contribution to their championship season and for being a generous, courageous and passionate human being away from the field. This heartwarming video shows how close the team came to their inspirational bench coach during the 2014 season.
Nihal from Mumbai, India, passed away in 2016 at the age of 15. Nihal was a big science fan who loved to paint. You can see some of his wonderful artwork on his Facebook page, TEAM NIHAL and on his Twitter, both still active by his Dad, Srinivas. One of Nihal’s greatest dreams was to ride in a Lamborghini-a dream that came true early in 2015 at Lamborghini Mumbai, who surprised Nihal for his 14th birthday. Nihal was a pivotal figure in the campaign #Finding60inIndia, part of PRF’s Find the Other 150 Campaign in partnership with India’s MediaMedic Communications. It is estimated there are 60 children in India who we are looking to identify and connect with so that they can get the unique help they need, including participation in the PRF-funded clinical drug trials. Watch this video featuring Nihal for more information.