Down syndrome, also known as trisomy 21, is a genetic condition caused by an extra copy of chromosome 21. This results in some level of intellectual disability, developmental delays, and certain physical traits. According to the National Down Syndrome Society, Down syndrome is the most commonly occurring chromosomal condition, occurring in approximately 1 in 700 babies born in the United States each year.
One of the most well-known children living with Down syndrome is Samuel Garner Affleck, son of actors Ben Affleck and Jennifer Garner. Samuel was born in February 2012 and his parents announced his Down syndrome diagnosis soon after his birth.
Understanding Down Syndrome
Down syndrome can cause a variety of developmental delays and medical issues. Common physical traits include low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Heart defects, problems with vision and hearing, gastrointestinal issues, and susceptibility to respiratory infections are also common.
The level of intellectual disability can vary greatly from person to person. Most people with Down syndrome have IQs in the mild to moderate range of disability. Common challenges include learning at a slower pace, delayed language and speech development, and impaired short-term and long-term memory. However, with early intervention and education programs tailored to their abilities, many children with Down syndrome can attend school, hold jobs, and live semi-independently as adults.
The additional copy of chromosome 21 results from a random error in cell division during the development of the egg, sperm cell, or embryo. The risk increases with the mother’s age at conception. Diagnosis often occurs during pregnancy through prenatal screening tests like amniocentesis or chorionic villus sampling. It is also diagnosed at birth by observation of physical characteristics and confirmed through chromosomal analysis called a karyotype.
There is no cure or specific treatment for Down syndrome. Care focuses on treating and preventing medical complications and supporting development through various therapies and learning programs. Life expectancy has increased dramatically in recent decades, with many now living into their 60s.
Samuel Garner Affleck’s Early Life
Samuel Garner Affleck was born in Santa Monica, California in February 2012. He joined siblings Violet, born in 2005, and Seraphina, born in 2009. Parents Ben and Jennifer noticed early signs of the condition and had their suspicions confirmed not long after his birth.
The couple released a joint statement about the diagnosis saying: “We have been blessed with the birth of our son. He has Down syndrome so we will need to work harder…We feel incredibly blessed and know that people’s prayers and support have helped us get through this difficult time and will continue to help us as we raise our child.”
In interviews over the years, Jennifer Garner has been open about the challenges and joys of having a son with special needs. She has admitted that the diagnosis was difficult to process at first. But she emphasized that Samuel is just like any other child who needs endless love and care.
Affleck has also spoken about how Samuel’s birth changed his outlook on life and parenthood. He said, “It’s made me a better person. It’s allowed for growth. It’s enabled me to understand my own issues and flaws.”
Samuel’s Early Development
In the first few years of his life, Samuel underwent early intervention therapies focused on his speech and physical development. Jennifer Garner has described working with many types of therapists and specialists during this period. She said of Samuel’s development: “What is luckier than having this beautiful boy who’s just good and easy and where all of a sudden you are having conversations about things that matter and that feel big…I’m so lucky to have Samuel.”
Samuel appeared to reach developmental milestones more slowly than is typical, as expected with Down syndrome. Garner once described Samuel being enthralled and entertained by infant toys and games at age three, showing his intellectual development lagged behind his physical growth. But his family emphasized that he was a joy to be around.
Garner has occasionally shared snippets of Samuel on social media as he grew older. The videos showed him smiling, playing sports, reading, and singing along to his favorite songs. He appears to have grown into a happy boy who enjoys many hobbies and activities.
Life as Part of the Affleck Family
The Afflecks have worked to make sure Samuel lives a full life and is always included. As infants, photos showed Violet and Seraphina lovingly holding their baby brother. When the family goes on outings, Samuel can always be seen along with his siblings.
In an essay for Today, Jennifer Garner wrote about the time her kids begged to get a dog, but she was nervous about adding the responsibility with Samuel still so young. But he bonded with and learned from their new family dog, and it became a touching example of the benefits of inclusion.
Ben Affleck told Today in 2013: “They all take care of each other. Samuel is the most thrilled because the girls make such an effort to play with him and include him.”
The family has emphasized that Samuel will be treated the same as his siblings without preconceived limitations placed on him. Affleck said: “He’s no different from any of our other children. He may do it on a slower schedule, but he will do it all…We’re going to celebrate all of his achivements. And we’re gonna enjoy it all.”
Advocacy and Awareness Efforts
After getting involved with local Down syndrome community groups, Samuel’s parents wanted to expand their advocacy. In 2013, they launched The Samuel Garner Affleck Fund through the nonprofit FBR (Foundation for Blind Children) which works with children with disabilities in Phoenix, Arizona where Jennifer Garner is from. The fund provides grants to programs for kids with physical and development disabilities such as specialized summer camps.
Ben Affleck announced the fund saying: “They’ve helped us navigate through an uncharted experience…It’s our turn to help others now.” Garner added, “The mission is very simple, but the results provide endless happiness.”
In 2015, Jennifer Garner was honored by the Global Down Syndrome Foundation for her work raising awareness. She said, “My hope is that as he gets older and children with Down syndrome are sometimes marginalized, my son will always have a community.”
She has used her platform to advocate for inclusion in schools and fair representation in the media. On Samuel’s 10th birthday, she called for people to help spread understanding and acceptance saying, “Inclusion happens one little moment at a time.”
Lessons on Parenthood and Disability
In having a son with Down syndrome, Affleck and Garner have gained perspective on patience, learning from children, and not giving up hope even when things are difficult.
Affleck has said that Samuel taught him “the meaning of life” in many ways and made him want to be a more thoughtful, decent person. Garner said that Samuel gives the family “so much gratitude” just for being himself and with his affection “makes us feel we are enough.”
They have emphasized that despite requiring a lot of care, having a child with special needs brings immense joy. Garner said: “The highs are higher, the lows are lower. But I love our life, I love when he wakes up in the morning, I love when he wakes up from a nap.”
In an interview with Today, Affleck explained: “It’s made me see the world differently. You have this child with challenges that are so profound, and all of a sudden, your own issues diminish. The day-to-day stuff is irrelevant. You have a much deeper sense of what matters.”
He went on: “I thought I had a sense of what mattered, a sense of balance in parenting and family life. This experience really affirmed that, and will make me a better parent to all of my children.”
Conclusion
Samuel Garner Affleck’s parents have not shied away from publicly discussing his Down syndrome. Their openness has provided inspiration and comfort for other families facing a diagnosis. They have worked to give Samuel the most normal childhood possible, full of learning, play, and love from his close-knit family.
While facing unique challenges, Samuel appears to be living a full and joyful life. His family’s advocacy has raised positive awareness and benefited many other children through specialized programs that Samuel himself participates in.
Ben Affleck summed up the profound impact of having a son with disabilities saying: “It’s changed my life. It’s changed the way I think about myself and about the world…Every day I’m so much in awe of just the remarkable kind of spirit he seems to have.”
Sources:
Interviews with Ben Affleck and Jennifer Garner from Today, Good Morning America, Dateline NBC, CBS Sunday Morning
Essays by Jennifer Garner in Today and Huffington Post
National Down Syndrome Society FAQ and fact sheets
Reporting by People Magazine, ET Online, Us Weekly
The Samuel Garner Affleck Fund website
Global Down Syndrome Foundation press releases