On November 18 2009 at 4:02 am William Alan Bartosch was joyfully welcomed into our family. He weighed in at 7 lbs 9 oz and 20 in long. We were stunned to discover that he was born with Trisomy 21, or Down syndrome. We love him unconditionally from the top of his toe-head to the tips of his toes. We know that this diagnosis will not define him. He is a happy, healthy little boy that just happens to have an extra chromosome.



Follow us on this unexpected and exciting journey as we learn how to live life Will's Way.



Tuesday, October 4, 2011

Who is Down?

Down syndrome is named for John Langdon Down, an English physician who first published an accurate description of a person with Down syndrome in 1866.  In 1959, the French physician Jerome Lejeune identified Down syndrome as a chromosomal anomaly when he observed 47 chromosomes present in each cell of individuals with Ds instead of the normal 46.  The extra material is an extra copy of the 21st chromosome which is why Down syndrome is referred to as Trisomy 21 in the medical field.
I am not easily offended.  Some in the Down syndrome community find it offensive to say 'he has Down's' or 'he's a Down's'.  I do agree with the sentiment but I am just not offended because I likely said something of that nature before Will came into our lives or possibly about another disorder. 
I was once irritated when an older Audiologist was training a new doctor and while fitting him for the right ear piece she repeatedly said, 'he's a Down's, he's a Down's, don't forget he's a Down's', so that the new doctor would get a smaller ear piece.  Like I could forget!  I just wanted to tell her...he is not 'a Down's'...he is Will.  He has Down syndrome.  He is sweet and funny and stubborn.  He has more people that love him than you can imagine:)  He has clear, blonde hair and beautiful blue eyes and a smile that steals your heart.  He is not defined by Down syndrome.  He is Will...and he just happens to have an extra chromosome.


I will admit in the early days of Will's life I had to repeat this to myself often.  When I first brought my beautiful baby home from the hospital all I saw was Down syndrome.  So I kept telling myself that Ds did not define him, until one day I only saw Will.  I know it is hard for some people to see Will for who he is and not for his diagnosis since I did the same thing.  But Will is an amazing person and is not Down syndrome.  He is Will!

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