NEWSLETTER

October

Disability Rights of West Virginia
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2022

Down Syndrome

Article by Christy Black, Advocacy Specialist, WV Developmental Disabilities Council

Down syndrome is a condition in which a person is born with an extra chromosome. Typically, a baby is born with 46 chromosomes. Babies with Down syndrome have an extra copy or part of the 21st chromosome. A medical term for having an extra copy of a chromosome is ‘trisomy.’ Down syndrome is also known as Trisomy 21.

The syndrome is not new.  People with Down syndrome has been depicted in historical paintings from the 15th and 16th centuries. In fact, the first evidence of its existence dates back 2,500 years. The facial features of a people with Down syndrome are found in some ancient pottery and paintings. The syndrome is named after John Langdon Down, an English doctor who published a clinical description in 1866. The condition is sometimes referred to as “Down syndrome” for that reason.

Characteristics

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People with the syndrome may have some of the same characteristics such as almond shaped eyes, short stature, lower set ears, low muscle tone, etc. However, each person whether they have Down syndrome or not, has different abilities.  This extra chromosome can also cause both intellectual and physical challenges. 

Down syndrome remains the most common chromosomal condition diagnosed in the United States.  One in 700 births result in Down syndrome every year in the United States.  This results in about 6,000 births. There are three types of Down syndrome:  Trisomy 21 (nondisjunction), Translocation, and Mosaic. Regardless of the type of Down syndrome a person has some of the same features.

There are no known causes for the condition.  However, advanced maternal age is a risk factor even though the majority of babies born with Down syndrome are to women under the age of 35.  The condition occurs in all races and economic levels.

Screening and Diagnostic Testing

Screening and diagnostic testing can be performed to receive or confirm a diagnosis. Prenatal screens estimate the probability that the fetus would have Down syndrome. Diagnostic tests, on the other hand, can provide a definitive diagnosis with almost 100% accuracy.  In some countries, due to this testing, the condition has almost been eradicated due to professionals encouraging mothers to seek abortion with the diagnosis, even though studies on the impact of Down syndrome on families show that 96% of parents did not regret having their child.  Also, 96% of siblings wouldn’t trade their sibling who has Down syndrome for a sibling without it.

Parenting a child with Down Syndrome

As a parent of a child with Down syndrome, the condition does affect our family’s dynamics in both a positive and negative way.  However, that is part of life, and many things affect a family whether they have a family member with a disability or not.  Sure, I wish I didn’t have to advocate for things that other families take for granted like healthcare and education.  Regardless, that is what we do as parents.  If I were asked what advice I would give a new parent of a baby with Down syndrome, I would say do not define your child by their disability.  Your child will have some of the same hopes and dreams as a child without a disability.  The way they get there may be a little 

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different, but they can get there. Your child does not have a disease and does not need cured.  Your child may need extra supports.  Inclusion does not mean we must change to belong, and different does not mean less.  Have high expectations.  Encourage your child to have high expectations and never accept “can’t” or “won’t".

People with Down syndrome can and do work and live meaningful, productive, and independent lives in their community with and without supports.  The only thing that is broken and holds them back are mindsets of society who do not give people with Down syndrome, and other disabilities, opportunities, proper education, training, and support.

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