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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 social media pages and 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 January 2015, here is where the 126 known children* with Progeria live:
*This figure includes 101 children with classic Hutchinson-Gilford Progeria, all of whom have a progerin producing mutation in the LMNA gene, and 25 children in the Progeroid Laminopathy category who have a mutation in the Lamin pathway but do not produce progerin.
All descriptions are as of September 2013, and most photos were taken in 2012-2013.
First, here’s the latest 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. Sam enjoyed many things in his 17 years: he achieved 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. 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 lots of questions Sam answered about the film and his life.
Megan turned 13 in June 2013 – she’s officially a teenager! During filming she was 10 years old. She’s in the 7th grade and has many close school friends. She manages her sister Michaela’s volleyball and basketball teams. And if that wasn’t enough, this year she is also managing the high school dance team!!
Like many teenagers, she loves to say…LOL and YOLO (you only live once!). Her favorite songs are Stars and Big Green Tractor. She loves karaoke, playing in the school band and art. Her favorite pastime is running up and down the pastures with her 2 miniature horses. In May 2014, she will be standing up in her brother Josh's wedding and is very excited about that honor!
Megan was the first child to take the lonafarnib drug in June 2007 – it was an historic moment! She is currently enrolled in the Triple Trial. 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!
Sammy will be 18 soon! He is a very active and busy young man. Sammy attends a high school for high achievers who concentrate on the sciences. He wants to study nuclear physics at the University of Padova, Italy. His favorite activities include acting (he is involved in theater), reading, painting, and hanging out with his friends.
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, informing people who want to learn more about Progeria. 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.
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 just turned 4! During filming she was about a year old. She goes to a preschool 3 mornings a week. She likes it a lot, and has made lots of friends at school! Zoey loves to dance, draw, write, cut & paste, be silly, be with her best friends, and help her mom cook.
For a couple of years, her favorite song was Moves Like Jagger, then Feel This Moment, and lately it’s Call Me Maybe. Zoey loves music, singing and dancing. She has 2 older brothers, Aidan who is 7 ½ years old, and Gavin who is almost 6. They behave like typical siblings – they play together a lot but sometimes argue for no real reason.
In July 2013 Zoey began taking the 3 drugs as part of the Triple 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, from Texas who has a personality the size of Texas, too! This 6-year-old sweetheart is widely known for her fun videos and special relationship with her mom, Natalia – her 7 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!
Cam's family and friends created PRF’s Southwest Michigan and Pennsylvania Chapters, with lots of exciting events to raise awareness and funds for Progeria research, including the Kilometers for Cam road race and Purses for Progeria! To learn more about Cam, visit http://www.iamcam.org and follow our SWMI Chapter on Facebook and Twitter.
Hello world! My name is Carly
Carly-Q, as she is affectionately called by her parents and brothers Garrett and Grant, is an adorable, unstoppable bundle of energy! It did not take long for Carly to win the hearts and generosity of family and friends: Carly's supporters formed Team Carly-Q, a group committed to raising awareness and funds to find the cure for Progeria as fast as possible. The Team joined forces with our established Ohio Chapter. In July 2013, Carly joined the Progeria Triple Drug Trial, coming to Boston to enroll with her new friend Zoey. Check out Carly Q on Facebook and Twitter!
Meet Hayley from England, a teenager with Progeria who has captured the hearts of many around the world. Hayley has 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 book, Old Before My Time, written with her mum Kerry 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."
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!
This site was created in memory of Kristian, who passed away in 2006. His parents have written an informative, loving chronicle of his too-short life of 3 ½ years, and have filled the site with beautiful pictures of this wonderful little boy.
Each year, they hold Kristian’s Walk for Progeria Research in his honor, where a crowd of family and friends release hundreds of bright blue balloons at the starting line.
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 Haylee 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, and her supportive family and friends. You can also find her on Facebook!
Meet Michiel who loves playing soccer, computer games, hanging with his friends, and being a disc jockey, and his younger sister, Amber who loves to play with her parents, horse around with Michiel, and also disc jockeying! Read about these siblings from Belgium on their multi-lingual site made 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.
Nathan and Bennett are brothers with Progeria from the United States. Nathan likes to wrestle with Bennett and loves his Saturday morning sports class. Bennett 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!"
For more on this adorable pair, visit www.nathanandbennett.org
Lovingly designed and written by Ory's mom, this site has lots of information on this adorable boy, who passed away in 2006 at the age of 10. Get to know Ory through the many pictures and video and audio clips – he was truly special!
Zach Pickard and his family are PRF’s Ambassador family. When he was diagnosed with Progeria in 2007, his family and their friends took action, holding fundraisers, speaking with the media and organizing PRF’s Kentucky chapter. Zach appears with NHRA Champion Erica Enders and motorcycle champion Kyle Wyman in a Public Service Announcement, and his contagious energy and smile will brighten your day – follow Team Zach Attack on Facebook and his website!