Step Up For Down Syndrome

It is that time again where we come together for Step Up for Down Syndrome previously known as The Buddy Walk........the walk is Saturday, October 8th....

We are amazed daily by our Janie...she is growing up so fast and is progressing in so many areas.  Her speech is emerging and the sound of her little voice finally being able to express herself through familiar words is priceless.  She reaches down into our hearts everyday and touches us in ways only she can.

Jane completed kindergarten at Webster elementary this past year and will continue there this fall as a BIG first grader.  We continue to be thankful for her health...our last visit to the cardiologist revealed that she still has the 3 holes in her heart and they are not expecting them to close on their own.    God knows what will ultimately need to be done & what is in store for Jane.  We are trusting the experts at U of M to guide us on this path.  Jane continues to grow and is NEVER low on energy.  Not only is she keeping up with rest of the bunch...at times they have trouble keeping up with her.  I am hoping you will share this blog with anyone you feel would be touched by Jane's story.  Her story follows in the blog posted below. 

We are hoping you will walk with us...we get credit for every walker on our team and it cost nothing to walk. It is a fun day for the entire family...please consider walking.

If you would like to donate...every dollar counts.  If everyone I sent this to donated 5 dollars it would make a HUGE impact in the lives of those who are touched by this cause.

Thanks for taking the time to read this....we are so grateful for your support. 

To get started, visit

http://www.stepup4downsyndrome.org/  and follow the directions under Walk With Us....

our team is "Fans of Jane"

The Buddy Walk

Why do I walk?  The obvious and easy answer to this is that our family walks to show support for our daughter and all individuals with Down Syndrome.  We walk to raise awareness and to raise money.


The need to raise money is obvious.  More complicated are the questions what does it mean to "show support", "raise awareness" and why is this important to me?


This is important to me because the second my 6 year old daughter Jane was born, I knew deep in my bones that she had Down Syndrome.  I knew this before she was examined, before she was tested, and tested and tested.  I knew this before my doctor, husband, family and friends knew.  I also knew, just as surely, that I instantly loved her with all my heart and I would do anything for her.


The very night she was born, her father and I made a vow then and there.  We told each other that we would give her everything humanly possible to help and support her.  Doug made one request - he told me that when I was weak he would be strong and when he was weak I would need to be strong for him.  Over the next 4 days that followed, we waited for the official test results to confirm what I already knew in my heart.


We were blessed with an amazing amount of love, support and prayers from our family and friends.  Around the time Jane turned 4 weeks old we started getting back into our usual activities.  Jane began to see the world and the world could see her.  We saw her as beautiful.  We saw her as strong.  We saw her as smart.  We saw her as perfect.


We have been so blessed in that, those around us have come to the same conclusion.  I am thankful that we are living in the year of 2010.  That the days of instant institutionalism, low expectations and shame are withering away.  There is research and documentation for common health issues, there is intervention and therapy to help in achieving milestones.  There is proven research in regard to the therapies that helped our Janie learn to walk and one day will teach her to talk.  Yet, this is expensive.  It is commonplace for insurance not to cover any of the therapies that Janie has received.  We have yet to meet another family who has been successful getting their insurance to pay for the therapies we have been blessed with.  


It is also common for children with disabilities to be segregated within the public school system and not allowed in the "regular" classrooms.  The reasons given are that it is too expensive, there are not enough teachers, not enough time, and that those who can "keep up" will be slowed down. 

Jane is a daughter, sister, grand daughter, cousin, niece and friend.  She has taught us so much and we are forever changed because we have her in our lives.  Recently, my oldest daughter Madison caught me off-guard and asked me what my chances of having a baby with Downs Syndrome were when I had her...hard to believe that a 9 year old would have such a question.  When I told her 1 in 800 she responded loudly - "Thank you Jesus!".....she was so excited that God chose us.



We walk for many reasons, but the core reason I walk is that I want the world to see my girl as I see her.  Beautiful, smart, strong and perfect. 


She is worth it - that is why we walk and are asking you to consider walking with us.  The link is below - walking with us and or making a small donation would go a long way.  Thank you for being there for us and please continue to pray for Janie and others with Down Syndrome. 


Jackie