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Down syndrome (also known as Down’s syndrome in the United Kingdom and often referred to as “DS” among families of those with Down syndrome) is the most prevalent genetic cause of learning or intellectual disabilities. One in every 800 babies is diagnosed with Down syndrome. Down syndrome is an abnormality of chromosome 21 that results in extra genetic material, and can be caused by three distinct genetic variations. Over 90 percent of Down syndrome cases are caused by Trisomy 21, in which children have three copies of chromosome 21 in all of their cells (instead of the normal two). Children with Mosaic Down syndrome, a rare form of Down syndrome, have three copies of chromosome 21 in some of their cells but the usual two copies in other cells. In children with Translocation Down syndrome, part of chromosome 21 attaches to another chromosome.

Also, children with Down syndrome can have other health conditions. Half of children with Down syndrome have congenital heart defects, some of which require surgery. People with Down syndrome have a higher chance of developing leukemia in childhood and are at higher risk of getting pneumonia and other infectious diseases. Moreover, people with Down syndrome are at increased risk of sleep apnea, dementia, and obesity later in life.

Children with Down syndrome can benefit from early intervention programs to help them increase their quality of life and realize their full potential. Early intervention programs are specialized programs for children with Down syndrome that helps to stimulate them in infancy and as young children with motor, sensory, and cognitive activities. Special therapists help children develop certain skills, such as motor skills, self-help skills, social skills, and language skills.

Parents and families of children with Down syndrome can benefit from the help and support of other families impacted by the condition. Online support groups allow parents to talk directly with others to share advice, stories, and help. The websites of different organizations offer parents insight on Down syndrome, as well as information on how to teach children with Down syndrome both at home and at school. Many of these organizations also offer advice on transitioning young adults with Down syndrome to living on their own. In addition, some organizations offer in-person support and social groups and activities and may match parents to other families in their area.

Organizations

  • The Arc: Promotes human rights for people with disabilities. The website includes information on Down syndrome, civil rights, employment rights, housing, and long-term care.
  • MUMS Parent-to-Parent: Matches parents of children with Down syndrome with other parents for support.
  • Association for Children with Down Syndrome: ACDS offers services for individuals with Down syndrome, for parents of children with Down syndrome, and for caregivers.
  • National Down Syndrome Society: NDSS advocates for the acceptance and inclusion of people with Down syndrome. Also, the NDSS website has information about Down syndrome and about education and healthcare.
  • National Down Syndrome Congress: Information for expectant parents, parents of children with Down syndrome, and advocates. The NDSC also provides information on healthcare, schooling, and integration.
  • Sibling Support Project: This organization supports the siblings of people with developmental or health conditions.
  • The Down Syndrome Research and Treatment Foundation: DSRTF provides parents of children with Down syndrome information, research, and online discussion.
  • Down Syndrome Research Foundation: Provides information for new parents of children with Down syndrome. Also has in-person programs in British Columbia, Canada.
  • Down Syndrome Association of Toronto: Supports the parents of children with Down syndrome through new parent education guides, hospital visits, social events, and other group events.
  • Canadian Down Syndrome Society: Resources for parents, new parents, and families of people with Down syndrome in Canada.
  • Down’s Heart Group: This UK charity provides support and information on heart conditions associated with Down syndrome.
  • Down’s Syndrome Association of the UK: Resources for people with Down syndrome and their families in the UK.

Education on Down Syndrome in Children and Adults

  • Birth Defect Research for Children: Provides information for parents of children with Down syndrome and other conditions. The organization will match parents with other families whose children have the same or similar conditions and links to support groups.
  • Learning about Down Syndrome: Information about Down syndrome and its diagnosis and treatment.
  • Resources for Parents: Answers to parents’ questions about parenting a child with Down syndrome. This site includes information on parenting newborns to young adults transitioning to living on their own.

Inclusion

Healthcare

Personal Stories of Down Syndrome in Children and Adults

  • Stories and Poems: Stories and poems by people affected by Down syndrome.
  • Prenatal Stories: The stories of parents who received a prenatal diagnosis of Down syndrome.
  • Down Syndrome Online Support: An online support group for parents of children with Down syndrome.
  • Bulletin Boards: Parent to Parent bulletin boards for parents of children with Down syndrome. Includes bulletin boards on education and medical issues.
  • Disability Experiences: Parents and caregivers share their stories of caring for and loving children with special needs.
  • Support for Special Needs: Forums and resources for parents and siblings of children with disabilities.
  • Breastfeeding and Down syndrome: Breastfeeding information for mothers of newborns with Down syndrome. This site also includes personal stories.
  • Down Syndrome Listserv: A listserv of people affected by Down syndrome.

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