DSAM 2016

I can't believe that another year has gone by and we can officially begin the celebration for Down Syndrome Awareness month. October is also Breast Cancer Awareness month and I will be sharing lots of inspiring and meaningful stories of courageous women I have the honor of bring connected with.

To kick off DSAM 2016 I have partnered with The National Down Syndrome Society and started a campaign to celebrate differences, promote inclusion and raise funds for this amazing Human Right's Organization.

My goal is to raise $5,000 by the end of the month in support of NDSS and all the great work they do for The Down Syndrome community and families like mine. The campaign is inspired by my 5 year old son Blake! 

DONATE HERE

Any size donation is helpful and appreciated. No donation is too small (or big!). If you are unable to donate please consider sharing the link on your Facebook, Instagram, Twitter, Blog or email your contacts.  You never know who will be come the next Parents, Sibling, Cousin, Friend of someone who has Down Syndrome. Blake wasn't diagnosed until after he was born in May of 2011 and our world was forever changed!

Together we can create an inclusive world that is full of love, respect, community and celebrate our differences. Lets face it, we all have differences, challenges and ABILITY! There is room for all of us to shine and support one another!

How will you celebrate Down Syndrome Awareness Month?

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.

GET AN EDUCATION - WATCH THIS

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!

Generosity is ALWAYS in Style

My husband David, Our Son Blake & Myself at Christmas

The National Down Syndrome Gala and Auction is an amazing event that for the past two years I have had the pleasure of participating in by way of raising and contributing auction items.  Because of my son's designer genes, Down Syndrome has connected me with some amazing people.

I wanted to take this opportunity to extend my SINCERE GRATITUDE for the generosity of the following people. 

Their talents are only exceeded by their generous hearts.

Kristen Johnston - Actress/Author

She kindly donated a signed hard cover book (which is now out of print) AND the most coveted item of all - her TIME (a skype chat with the winner).

Actress/Author/Mompreneur - Tori Spelling & Actor/Gourmet Dad - Dean McDermott

They donated an AMAZING basket of goodies; Tori's books, autographed pictures and Gourmet Dad Gear! (Books Available at InvenTORI)

Ruthie Davis - Shoe/Bag Designer

Ruthie donated a CHIC clutch to the auction in honor of her nephew Michael!

Louis Van Amstel - World Champion Dancer, Dancing with the Stars Cast Member and Creator of LaBlast.

Louis generously donated a complete set of his Dance Fitness DVD's - LaBlast! 

Hayley Marie - Photographer

Hayley graciously donated 2 amazing prints from her back to nature collection.

JUSTFAB.COM - Online e-tailer of Fabulous Shoes, Bags, Jewelry and Denim!

They were so amazing to let me choose the 2 bags (Law & Adventure ) AND the gorgeous cuff they donated.

 Evolution Vintage  - I styled two different gift sets with EV tees, REWIND Rings, Vintage clutches and a piece from the REWIND hair collection.

From the bottom of my HEART and the HEARTS of all living with Down Syndrome and their families THANK YOU!

Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love. 

Lao Tzu 

A Stylish Way To Give: FASHION

Tis the season to be charitable and there are many ways to donate other than money.  You can use your time, skills and even your closet! An organization closet to my heart The National Down Syndrome Society has recently partnered with Fashion Project for the holiday season! Now would be a great time to dig into those closets and send some of your fabulous designer or higher-end items to this wonderful cause.  

Your contribution is two fold. You will be sending your no longer used piece of clothing and/or accessories and giving another woman an opportunity to purchase it at a great price AND you will be helping those who the NDSS service, like my son Blake.

How it works:

* Sign up online between NOW-Dec 22 and Fashion Project will send you a Donation Bag.

*Choose your Charity - NDSS

* Fill the bag with your fabulous items

*Return to them and NDSS get's 60% of the sale price!

*Feel AMAZING that you are helping women look fabulous AND helping people with Down Syndrome

I also don't just blog to get the word out. I always put "my money where my mouth is", in this case my SHOES! I will personally be donating a near new (WORN ONCE) Pair of DIOR Mule's. I NEVER ask someone to do something that I am not willing to do myself.

Be a Stylish Santa this year... Get into those closets!

Have nothing to give/donate??  SHOP by Charity. Here are the items available thus far to support NDSS

If you are going to donate please comment and share what you will send!

“We make a living by what we get. We make a life by what we give.” 
― Winston Churchill

I'm DOWN with INCLUSION

Let me start by extending a BIG THANK YOU to NoahsDad.com for starting a much needed public dialogue about inclusion and equality for all children but specifically children with Down Syndrome. For me, inclusion is implied considering Down Syndrome has been part of the human condition since the beginning of time, but it turns out there are still a lot of closed minds and hearts out there.

Noah's Dad (Rick) hosts and writes a blog that chronicles his and his wife's life with their beautiful son Noah. He recently posted his thoughts and a thank you to Target for including a model in a recent ad campaign who happens to have Down Syndrome. He also thanked the retail giant Nordstrom for including the same model in their recent Anniversary catalogue. I am HAPPY to report that this post caught the attention of mainstream media which in turn has opened up a dialogue about inclusion, embracing our differences and celebrating them. It is through education and awareness we can start to make and see societal changes.

My son Blake has Down Syndrome and I am so PROUD that he does. He can be a representative of equality, life and LOVE in our judgemental world. Blake and I have committed our voices to the fight for EQUALITY and INCLUSION for ALL regardless of gender, race, perceived disability, sexual orientation or any other "difference" from the herd mentality. 3 cheers for NOAH and NOAHSDAD.COM for starting this important dialogue. I am excited to see what power the media has for more inclusion for members of the Down Syndrome community.

This media coverage makes me excited because I now wonder are we really evolving as a human race? as a society? are our generic and limited views of beauty changing? are big corporations now going to send a message of inclusion and equality? rather than corporate greed and a herd mentality? I look forward to getting these questions answered. In the meantime organizations like the NDSS (National Down Syndrome Society) and people like Rick are working to educate and inspire the world to open up their hearts and in turn their eyes.

Blake's Story: DOWN but not OUT

In honor of National Down Syndrome Awareness Month I teamed up with my friend and loving mother of 3 Tori Spelling and contributed my story to the Raise section of her eMAG EdiTORIal yesterday.

Read My Story: DOWN but not OUT HERE


Blake 2 days old - Special Care

This was my reality in the first week of Blake's life. He fought to be here and it was his courage that inspired mine.

As I look back on the last 5 months of Blakes growth I am forced to think of my own. Never has my character been so tested, my constitution so tried or my values and belief system so rocked. What I have realized is that our energy, collectively is best spent celebrating our differences and not judging them. We are ALL guilty of it (Myself included). What a boring, generic world we would live in if we were all the "same" or "similar". Where applicable apply the label of LOVE only.

The comments I have received from my family, friends and most of all virtual strangers in the last 24 hours have been overwhelming to say the least. I cried a lot yesterday while reading the public comments as I realized how many amazing, genuine, good hearted people in there are in this world, more than enough to drown out the negative, ignorant ones.

I look forward to what the future will hold with Blake and the rest of my family. A future that is unknown for all of us. We will enjoy our moments together confident in the fact that the world may knock us DOWN but they will never take us OUT! This is just the first you are hearing from me but I fully intend on becoming a LOUD voice of advocacy and information as I strive to give children with DS a voice. Sharing facts, and feelings in an intelligent and empowering way! I am PROUD of my son's extra chromosome ... Turns out thankfully MORE is MORE xo


"Every human being is intended to have a character of his own; to be what no others are, and to do what no other can do." - William Henry Channing


For more information about Down Syndrome visit the NDSS website.

Want to read more personal stories from the DS community? Many mothers reached out to me yesterday and shared their virtual spaces of LOVE!

Kellie: Enjoying the Small Things
Christine: Brody's Buddy Ride
Amy: GiGi's Playhouse
Kayla: Loving Austin
C. Smith: Results Not Typical
Amy: Mayson
R-WORD: Pledge to choose your words wisely and kindly!

Julie: Nina's Story