Saturday, October 1, 2011

October is Down Syndrome Awareness Month

Are you lost as what to do or how to kick off this month? Write a letter, an email and send it out to your friends, family and coworkers.

This was my email I blasted to the entire company I work for:

Hello friends and fellow coworkers!
October, aside from being Breast Cancer Awareness month –a great cause that I sincerely support, is also Down Syndrome Awareness Month.

As you all know, my son Ethan who just turned two in August was born with Down syndrome. And in honor of him, I would love to share some facts about Ds.

1 in every 691 babies is born with Down syndrome, the most common type is also referred to Trisomy 21. Ds is the most common occurring chromosomal disorder. Ds occurs at the time of conception and nothing the parents do before or at time of conception determines if a the baby will have Ds. There is no known cause of why Ds occurs.

-And to be more accurate (and complicated), there are also other types of Down syndrome besides Trisomy 21 that are not caused entirely by a complete triplication of the 21st chromosome. There is Translocation Ds (were a piece of the 21st chromosome breaks off and attaches itself to another chromosome) and Mosaic Ds (which happens after conception during cell division were a cell goes astray during division causing a triplication on some cells but not all.) Regardless of which type it is, it does not determine how the individual will be affected.

Approximately 4000,000 families in the United Stated have a child with Ds, and about 6,000 babies are born each year. With more and more babies being born each year, there is a need for widespread public education and acceptance.

Most people with Down syndrome have IQs in the mild to moderate range of intellectual disability. Recently a law (Rosa’s Law) was passed to change the term mental retardation to intellectual disability  due the negative connotation associated with the word retard(ed). (Please reconsider using the word, it is dehumanizing and offensive to individuals with developmental disabilities. And if you cannot get yourself to stop using the word, out of respect I ask you kindly to please refrain from using the word in my presence.)

People with Ds have a higher incidence of certain medical conditions, such as heart disease, thyroid disorders, Alzheimer’s and childhood Leukemia.
Ethan was born with a  minor heart defect that his cardiologist believes has healed itself, if not he will require heart surgery but the chances of that are very slim, he also has hypothyroidism which will be treated with daily medication.

Aside from that, Ethan is your typical rowdy-loud-super hyper-never gets tired 2 year old. His biggest challenge is speech, but with therapy, sign language and lots of patience we will overcome this obstacle.

He is more than a blessing in our lives and no one should ever pity or feel sorry for us or any other family that has been blessed with an individual with Down syndrome. The initial shock of the diagnosis at birth was devastating but through the grace of God and the community and friends and family, we overcame those difficult days and now see the true beauty that a child like Ethan radiates. Yes our lives are slightly different with more doctor appointments and therapy sessions, but it is not that much different than anyone else’s.

Thank you for reading!

Very proud mother of a child with Down syndrome,

You can support our Houston Buddy Walk team,
benefiting the Down Syndrome Association of Houston:
Ethan's Jackrabbits

Speak from the heart and spread the word!


1 comment:

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