Meet The Kids
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 September 2018, here is where the 155 known children* with Progeria live:
* This figure includes 119 children with classic Hutchinson-Gilford Progeria, all of whom have a progerin producing mutation in the LMNA gene, and 36 children in the Progeroid Laminopathy category who have a mutation in the Lamin pathway but do not produce progerin.
Get to know the children featured in the HBO Documentary Life According to Sam, and many more from around the world!
All descriptions were updated July 2015, and most photos were taken in 2013-2015. First, updates on Sam, 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 December 2018, his October 2013 talk on his philosophy for a happy life has been viewed by 31million people, 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.
Click here to see Sam answering questions about the film and his life.
PRF’s Youth Ambassador
Meghan is an accomplished cellist and violinist, high school cross country and track team athlete and published poet and book author. She is a senior in high school and lives with her family in Massachusetts. Meghan now serves as spokesperson for The Progeria Research Foundation, from the perspective of a youth with Progeria. In this role Meghan focuses on engaging youth around such events as Hats ON for Progeria, sharing her ideas on how to impact people through social media, and participating in PRF media outreach. Order a copy of her book here: https://progeria-research-foundation-shop.myshopify.com/products/running-on-the-wind-a-book-by-meghan-waldron-prfs-youth-ambassador
During the filming of Life According to Sam she was 10 years old. Now Megan is eighteen and in high school. Megan loves riding horses and enjoys crafting jewelry for all her friends.
Megan was the first child to take the lonafarnib drug in June 2007 – it was an historic moment! She is currently enrolled in the Lonafarnib Trial Extension/Expansion. When schedules allow she comes to Boston for her trial treatments with her friend Meghan 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 23 years old and is from Italy. His favorite activities include acting, reading, painting, and hanging out with his friends. 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 United States from Chicago to Los Angeles with his parents, Laura and Amerigo, and friend Richard. Sammy’s parents founded the Associazione Italiana Progeria Sammy Basso to raise awareness, fund research and provide support services to the families. Sammy is a spokesperson at foundation-related meetings, conferences and events. People in Italy 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.
Meet Adalia – she’s from Texas and has a personality the size of Texas, too! She loves to sing, dance and play dress up. This 12 year-old sweetheart is widely known for her fun videos and special relationship with her mom, Natalia – her 14 million Facebook followers are proof of that!
Brennen is a 9 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 teamon the Team Brennen Facebook page.
During filming of Life According to Sam, she was about a year old and now she is nine! 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!
Meet Claudia, from Portugal, who is 20 years old. Her favorite color is Blue, favorite school subject is Foreign Languages, and her favorite food is “Punched” baked potatoes with salted cod (In Portuguese it is “Batata á murro com Bacalhau”). She also loves music, dancing, and going out with friends.
Beandri is 13 years old, and from South Africa. She loves all girly stuff like a normal girl of her age, especially make-up, dresses and looking pretty. She loves listening to music and singing along to her favorite songs. She is in the school choir and enjoys it tremendously. She loves her Yorkies, and has three older brothers who love her very much. Follow Beandri on facebook – Beandri, our Inspiration.
Enzo is an adorable seven year old boy from Australia. He is a whirlwind – constantly in motion, smiling and always having fun. “He loves anything with wheels, Mario Kart and riding motorcycles” says his mother, Catherina. “He plays with his planes, Legos and builds tracks for his trains.” He spends time playing board games and making puzzles. He goes to school full time and loves his teachers and friends, who help Team Enzo with their fundraising. Enzo is one of the youngest children so far to enroll in PRF’s Clinical Trial, coming to Boston in April, 2015 at age 3 for his first treatment. Enzo visited the PRF offices on his trip, and we saw firsthand how active and happy he is and his mother says, “Enzo is a big boy now who is full of life and extremely happy.” See Enzo in motion and meet his family in this special video. You can also support Team Enzo on their fundraising page.
Cam is an active, sports-loving 12-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. Watch Cam’s video to learn more about him and his family: https://www.youtube.
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.
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. https://www.youtube.com/user/TeamCarlyQ
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 on facebook.
Lindsay is a bundle of energy and all smiles! Lindsay is an extremely intelligent girl with a wild sense of humor and infectious laugh. She loves school, her friends, and her many hobbies, most of which include a lot of movement! Lindsay was featured with Hayley and Kaylee on the 2010 Barbara Walters 20/20 Special ‘7 Going on 70’. Visit her web site, LittleLindsay.com, to see lots of pictures and learn about her yearly event, Miles for Miracles, organized by PRF’s Michigan chapter run by Lindsay’s loving parents, supportive family and friends.
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.”
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 13 and Bennett is ten. 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.
Kaylee is from Ohio and is fifteen years old. Kaylee’s family and friends started PRF’s Ohio Chapter in 2006, and have had tremendous success with its signature event, Kaylee’s Course. More recently, they spend a night each summer at their local ice cream shop, Freeze Daddy’s to raise money for PRF. Kaylee and her brothers enjoy serving ice cream all night, and attendees vie for raffle prizes and check out some vintage cars. Kaylee is quite the local celebrity and a very busy girl, you can also find Kaylee on musical.ly, where she has over 3 million fans! Keep up with Kaylee by joining her Facebook Group!
Zach is eleven 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.
Michiel & Amber
Meet Michiel, 20, who loves snowboarding and kart racing, computer games, hanging with his friends, DJ’ing, and “The Big Bang Theory”. His 12-year-old sister Amber loves to horse around with Michiel, 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.
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.