Down Syndrome (Trisomy 21)

Down Syndrome is a genetic condition caused by an extra copy of chromosome 21. It's the most common chromosomal condition, occurring in about 1 in every 700 babies born in the U.S. People with Down Syndrome have varying degrees of intellectual disability and may have associated health conditions.

What this means for your family: Your child will develop at their own pace — often slower than typical peers, but they WILL develop. People with Down Syndrome today are living longer, healthier, more independent lives than ever before. Many attend college, hold jobs, and live semi-independently.

Life expectancy: Has increased dramatically — from 25 years in 1983 to 60+ years today.

Key fact: Early intervention services make a significant difference in developmental outcomes.

• Characteristic facial features (flattened face, almond-shaped eyes, small ears)
• Low muscle tone (hypotonia) at birth
• Developmental delays in speech, motor skills, and cognitive abilities
• Possible heart defects (about 50% of babies with Down Syndrome)
• Increased risk of hearing and vision problems
• Generally happy, social, and affectionate temperament

1. Connect with Early Intervention immediately — therapy should start as early as possible
2. Schedule cardiac screening — heart defects are common and treatable
3. Establish a medical home with a pediatrician experienced in Down Syndrome
4. Begin speech therapy and physical therapy early
5. Connect with your local Down Syndrome Association — they offer parent support and resources
6. Start planning for the future — Special Needs Trust, ABLE account, and Letter of Intent

• IDEA: Your child qualifies for Early Intervention (0-3) and an IEP (3+)
• SSI: Most children with Down Syndrome qualify for Supplemental Security Income
• Medicaid: Provides health coverage regardless of family income in many states
• ABLE Accounts: Tax-advantaged savings up to $100,000 without affecting SSI
• Vocational Rehabilitation: Job training and placement services as your child grows