Tuesday, October 15, 2013

Down Syndrome Awareness Month

October is a month full of raising awareness for many important causes, Breast Cancer, Depression, Autism, and dozens more. For me the MOST important issue to raise awareness and promote education for is Down Syndrome (DS). This of course because my son Blake has and extra 21st chromosome.

There are many things I want to discuss between now and the end of the month so bear with me. The regularly scheduled fashion and style programming with appear intermittently between my posts about Down Syndrome and my experience thus far of being a mother of a son with perceived 'special needs'. I say perceived because everything is based on individual perception as live is a very subjective experience.

You can read the first story I ever wrote about Blake HERE
(and the follow up a year later HERE

Since Blake was born our family has had a warm welcome into the Down Syndrome community via organizations like the National Down Syndrome Society (NDSS) as well as from parents all around the world thanks to technology. Turns out this 'little something extra' has meant a LOT more to our family than I could have ever imagined.

During the coming days I will talk about Blake's birth, receiving the diagnosis, books and websites that have helped me navigate my new world, the up's and down sides of DS, social misconceptions/stigma, other peoples inspirational stories and more.
In this world where information is so easily accessible it fascinates me that people are still so UNeducated when it comes to DS.  Let's start my series of posts out with a few FACTS.

What is Down Syndrome? Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. Blake has Trisomy 21 (nondisjunction).

*There are three types of Down syndrome: Trisomy 21 (nondisjunction) accounts for 95% of cases, Translocation accounts for about 4% and Mosaicism accounts for about 1% 
This is an image of his actual chromosomal karyotype  from his test when he was born. Note the extra copy of the 21st.

*Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

*There are more than 400,000 people living with Down syndrome in the United States.Some estimates put the worldwide population of people with Down syndrome at more than 6 million.

*Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today. 

With early intervention, education, proper health care, nutrition, persistence, opportunity and most of all LOVE people with DS can reach their full potential and live happy fulfilling lives. As parents of ANY children this is all we want for our kids, to be happy. Being a good parent is a choice, a lot of sacrifice and hard work but the results far outweigh the efforts.

I am excited to share my journey with Blake with you dear reader and I'm first to admit that I am still learning and relatively new to this community (Blake is 2.5) but hope to be a voice of advocacy for Blake and all other children/families who have been gifted into the Down Syndrome community.

I read a statistic somewhere that 38% of Americans know someone with Down Syndrome.  

Do you?

Please share your experiences and stories in the comments!

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