Jennifer Graf Groneberg

Down syndrome is the most common chromosomal anomaly, occurring once in every 733 births.

During normal cell development, the original cell begins to grow by dividing and duplicating itself. Sometimes, for reasons that are not yet understood, the original cell does not divide evenly. When the extra genetic material is located at the 21st chromosome, it is called trisomy-21, which is also known as Down syndrome, after John Landgon Down, an English physician who first described the condition in 1866.

Although babies with Down syndrome have extra genetic material at the number 21 chromosome, all of their other chromosomes are normal. In fact, the material in the number 21 chromosome is normal, too—there is just more of it.

There is great diversity regarding intelligence, learning styles, physical ability, creativity and personality, because of the influence of the other 46 chromosomes in each baby’s genetic blueprint.

There are 3 types of Down syndrome, and Avery’s is the most common, which comprises 95% of the diagnoses. It is called nondisjunction trisomy-21, which means chromosome 21 did not disjoin from itself and divide evenly. This happens at the beginning of cell division and the extra genetic material is copied in each of his cells.

There is another form called translocation trisomy-21, where part of the number 21 chromosome breaks off and attaches itself elsewhere, sometimes to the number 14 chromosome, or sometimes to the other number 21 chromosome.

The third type of Down syndrome is a rare form called mosaicism, in which the trisomy occurs a bit later in cell division, so only some of the cells contain and perpetuate it.

The current, preferred terminology is Down syndrome. A child is a child first, so instead of a “Down’s baby,” you would say “a baby with Down syndrome.” This phrasing is called People First language and applies to anyone with a learning difference or a physical difference.

People with Down syndrome are not severely retarded, but fall into the mild to moderate range.

People with Down syndrome are not always happy (they have a full range of feelings, like everyone else).

Down syndrome is not fatal, and 80% of adults with Down syndrome live to age 55 or beyond.

Down syndrome is part of more than 350,000 families in the United States. It occurs in all races, and at all socio-economic levels.

"It takes a mother, and one who has been there, to tell the real story of raising a child with disabilities, just as it takes a mother to show the universal nature of mother love."     -Vicki Forman, Literary Mama.com

"While this book is surely a must-read for any parent of a DS child, I also feel there's a deeper story in here that every parent can relate to."    -Sheri Reed, mamazine.com

"I read a lot of books, and this is the one book I read last year that I finished in one sitting, peering through overtired eyes because I was so addicted to the story. There are at least a dozen pages folded over at the corner, pages with phrases that resonated, provoked thought, compelled me to triangle their edges so I can come back to re-read them...I'd rate this a must-read, for parents of children with Down's Syndrome, and for anyone who has ever struggled with feelings of guilt, inadequacy, or despair. And well, that would probably be all of us."    -Kristin Darguzas, ParentDish.com

"The obvious audience for this book is mothers of children with special needs, but I think it would be great if everyone read Road Map to Holland. Until very recently, the lives of families with special needs children have been pretty much absent from literature. Reading this book is like stepping into a new frontier."  -Suzanne Kamata, Love You to Pieces: Creative Writers on Raising a Child with Special Needs