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Saturday, May 8, 2010

Today is CdLS Awareness Day

Today is Cornelia de Lange Syndrome Awareness Day. Today, and every day, we celebrate all of the beautiful children in the CdLS family circle and all of their amazing accomplishments. Please take a moment to view the above CdLS Awareness Video. Visit the CdLS Foundation website to learn more about Cornelia de Lange Syndrome. With your help, we may be able to find one child and one family that may be seeking answers and need support. I am an awareness coordinator for the CdLS Foundation ~ something I greatly enjoy. Today I am sharing with you the reasons why I became an awareness coordinator ~ and why it is so important to reach out and let families affected by CdLS know they are not alone.

Our son Joey was born in 2004 and diagnosed with Cornelia de Lange Syndrome (CdLS) soon after. Since his birth, my family's lives have changed dramatically in many ways - many of them good ways.

Even though therapy sessions, doctor visits and special education services have become our lives, our normal, we have been blessed with a gift more valuable than we could have ever imagined. Joey has taught us so much about life and love; he has lifted our spirits and enriched our souls.

He also inspired me to become a volunteer awareness coordinator for the CdLS Foundation. There are so many important things to learn and share about CdLS. My family has chosen an open and honest approach when sharing information about Joey's condition. The more people learn about CdLS, the more comfortable they are around Joey, and that is beneficial to him.

The CdLS Foundation provides information, support and the materials I need to promote awareness in my community through various activities. Educational awareness about CdLS is such an important step towards understanding and acceptance. It is also very important to let other families know they are not alone in the daily challenges of raising a child with CdLS. I know firsthand that it helps to know there is a huge network of support available.

And finally, I became an awareness coordinator for the CdLS Foundation because I want to let people know it is okay to have a child with special needs. It really is okay. We don't seek sympathy. We don't have to be embarrassed or remain secluded. We just want the world to accept our children for who they are, for the good things they have to offer, for the smiles they create, and for the hearts they capture. Becoming an awareness coordinator has been one of the most important, and best, decisions I have ever made. Promoting awareness about CdLS gives the the strength and courage I need to be a strong voice for Joey and all children with CdLS.

17 comments:

  1. Thanks for being so great at spreading awareness and HAPPY MOTHER'S Day!

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  3. Rachelle..in the past few years thru the roads God has lead me down, I have been lucky enough to meet some amazing mothers and women. I can easily say you are on the top of this list. God bless you for what you do, and for what God has trusted you to handle.

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  4. 不要讓挫敗把你擺平,再給自己一個機會,從新再出發.............................................

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  5. 好喜歡你的部落格唷,剛下班,要去睡了!!!掰~~..................................................

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  6. 唯有用熱情、用智慧去觀察事物,這事物才會把他的秘密,洩漏給我們......................................................................

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  7. 生存乃是不斷地在內心與靈魂交戰;寫作是坐著審判自己。.................................................................

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  8. This comment has been removed by a blog administrator.

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