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Get to know the children featured in the HBO Documentary Life According to Sam, and many more from around the world!
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 December 2015, here is where the 134 known children* with Progeria live:
*This figure includes 107 children with classic Hutchinson-Gilford Progeria, all of whom have a progerin producing mutation in the LMNA gene, and 27 children in the Progeroid Laminopathy category who have a mutation in the Lamin pathway but do not produce progerin.
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. His October 2013 talk on his philosophy for a happy life has been viewed by almost 10 million 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.
Megan turned 15 in 2015! During the filming of Life According to Sam she was 10 years old. She’s going into the 9th grade and has many close school friends. She manages her sister Michaela’s volleyball and basketball teams, and also manages her 8th grade basketball team-she even got to play in a game this year!
Megan loves to play softball, basketball, and volleyball outside with her sister, friends, and family. She loves to sing and her favorite song is “Automatic" by Miranda Lambert. Her favorite pastime is running up and down the pastures with her 2 miniature horses, and sometimes riding them! She loves softball, pickles, and going on walks with the family and her two dogs, Daisy and Lily. Megan was confirmed in April 2015, which she was very excited about after two years of learning about God.
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 will be 20 this year! He is a very active and busy young man. Sammy attended a high school for high achievers who concentrate on the sciences. He plans to study nuclear physics at the University of Padova, Italy, starting in September. His favorite activities include acting (he is involved in theater), reading, painting, and hanging out with his friends. Last year, 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. In February, 2015, Sammy started his very own public Facebook page, Sammy Basso, and he already has almost 20,000 followers!
When asked if there was anything else he wanted to express, Sammy said he wants people to know that kids with Progeria are normal and they have a normal life, and to remind people that contributions are always welcome – spoken like a true advocate for the children and the research!
Zoey will turn 6 in September, 2015! During filming she was about a year old. She just ‘graduated’ preschool and is super excited to start kindergarten in the fall. She loves school and has lots of friends! Zoey loves to dance (especially tap!), sing, draw, write, cut and paste, be silly, be with her best friends, and help her mom cook.
Zoey loves music, singing (her current favorite song is Uptown Funk), dancing, and adores the movie “Frozen”. She has 2 older brothers, Aidan who is 10 ½ years old, and Gavin who is 8. 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. As you saw in the film, Zoey’s parents were anxious for her to enroll in the drug trial, and they’re thrilled that she is now participating! 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 Adalia – she’s from Texas and has a personality the size of Texas, too! This 8 ½ -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!
Adalia loves to sing, dance, color, and play dress up. Adalia’s family and friends recently started PRF’s eighth Chapter, to raise awareness and funds for PRF. Follow Adalia and our Texas Chapter on Facebook and Twitter!
From Beandri’s Mother:
“Beandri is 10 years old, but already acting like a teenager! We’re from South Africa, where there’s only two kids with HGPS. She’s our little Angel and we’re blessed that God trusted us to raise her to be an inspiration to everyone who meets or knows her. She loves all girly stuff like a normal little girl of her age, especially make-up, dresses and looking pretty. She loves listening to music and singing along to her favourite 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. Beandri sometimes struggles with the attention she gets, but if she’s comfortable, she’ll easily take over with a lot of enthusiasm. We believe the fantastic work that PRF is doing plays a big part in the fact that Beandri is still with us and a very healthy little girl.” Beandri has a Facebook group - Beandri, our Inspiration.
Brennen is a 6 year old boy from New York. He is very active, loves Ninja Turtles, his new puppy, and his little brother, Owen. Brennen’s family and friends started TEAM BRENNAN 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, almost 9-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 recently moved to the Pennsylvania area, and have merged with their family members to create Team Cam, one of our Pennsylvania Chapters. They hold exciting events to raise awareness and funds for Progeria research, including Cam’s Course and Purses for Progeria. To learn more about Cam, visit http://www.iamcam.org and follow him on Twitter. Watch Cam’s video to learn more about him and his family: https://www.youtube.com/watch?v=UF_2sHztfwI
Carly-Q, as she is affectionately called by her parents and twin brothers Garrett and Grant, is an adorable, unstoppable bundle of energy! It did not take long for Carly to win the hearts of family and friends: Carly's supporters formed Carly Cares, a group committed to raising awareness and funds to find the cure for Progeria as fast as possible. Every September they hold “Carly’s Party for the Cure”- an event that gets bigger each year! Carly loves Frozen, Curious George, Peppa Pig and Caillou. She is excited about starting kindergarten in the fall, and thinks it’s cool that her big brothers have their driver’s licenses and will always take her for ice cream! In July 2013, Carly joined the Progeria Drug Trial, coming to Boston to enroll with her new friend Zoey. Watch a short video of her with Zoey in Boston: https://www.youtube.com/watch?v=reh9GvH9Jis. Check out Carly Q on Facebook and Twitter!
Meet Claudia, from Portugal, who will turn 17 in October, 2015. 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. Catch up with this fun teenager on her Facebook page.
Enzo is an adorable boy from Australia who turned 4 in August 2015. He is a whirlwind - constantly in motion, smiling and always having fun. “He loves anything with wheels,” says his mother, Catherina. “And he’s totally obsessed with planes.” Enzo is one of the youngest children so far to enroll in PRF’s Clinical Trial, coming to Boston 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! His family started TEAM ENZO, participating in the last two ONEpossible Campaigns and helping spread awareness in Australia and around the world. See Enzo in motion and meet his family in this special video. You can also support Team Enzo on their fundraising page.
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 her adventures on her website 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 (nick-named "Bubby" because his little sister couldn't pronounce "brother"!) is quite a character, whose love of baseball has captured the attention of sports fans everywhere. Josiah was featured in a 2010 segment of 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 continues to move 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: https://www.youtube.com/watch?v=-ZQ1Yb7QdDo
Kaylee “is such a happy little girl, it’s hard to feel anything but thankful God gave us such a beautiful and happy child" say her parents. Kaylee’s family and friends started PRF’s Ohio Chapter in 2006, and have had tremendous success with its signature event, Kaylee's Course. Kaylee is quite the local celebrity and a very busy girl, with softball, cheerleading, karate, tap and jazz dance being some of her favorite activities! Keep up with Kaylee by joining her Facebook Group!
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.
Michiel and Amber
Meet Michiel, 17, who loves snowboarding and kart racing, computer games, hanging with his friends, DJ’ing, and “The Big Bang Theory”. His 9-year-old sister Amber loves to horse around with Michiel, gymnastics, dancing, the color green and the TV show “Violetta”. 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.
Nathan and Bennett
Nathan and Bennett are brothers with Progeria who live in Erdenheim, 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, age 10 in August 2015, likes to wrestle with Bennett and loves his Saturday morning sports class. Bennett, 6 years old, likes to play with his kitchen play set, piano, and bowling set. SpongeBob SquarePants, Mickey Mouse and grilled cheese are just a few of the boys' favorite things! Each brother has his own unique personality. Mom says, "Nathan is a great little guy. He is very easygoing and fun’, while brother Bennett is "a very energetic little boy with lots of attitude!” Their family and friends created “Fighting for Their Future”, a fundraising group to help raise awareness and funds for PRF. This group has now become a new Pennsylvania Chapter for PRF! 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 on this adorable pair visit their website.
Say Hello to Nihal from Mumbai, India. Nihal is big science fan who also loves to paint. You can see some of his wonderful artwork on his Facebook page, TEAM NIHAL and on his Twitter. 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 had his first visit to Boston in December, 2014 to begin his participation in the Progeria Funded Clinical Trial Extension/Expansion. His father, Srinivas, shared his thoughts on enrolling in the Progeria clinical trial: “Flying out to Boston from Mumbai! Can’t thank enough my dearest friends, beloved family, and all from PRF for making this possible!” Nihal is a pivotal figure in the recently launched #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.
Zach lives in Lexington, Kentucky in the USA (Go Cats!) Zach loves the color yellow and is addicted to Minecraft videos. He loves travelling, 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. The family is currently PRF’s Ambassador family.
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 at www.zach-attack.org.