Tag Archives: miami

Light at the End of a Marathon

Congratulations and thank you, Roxane! Roxane ran the entire marathon, not walked and ran, but ran the entire marathon and also raised $1,400 for our scholarship fund. But the biggest event was Roxane’s epiphany. I would like to share with you her own words describing her wonderful experience:

“A personal note about the race that I’d like to share with you. Before the race, I hugged my daughter Mila for making me so strong and allowing me to achieve such a grueling athletic performance. On race day, I received a very big gift. One I could call: ” And with the running, came the healing” …in a very unexpected yet beautiful way. As I walked to the starting line, my shirt proudly said “Mom of 4. My special-need kid rocks.” I realized how much I, as a mourning parent -you know, we all have to move on past the loss of a “perfect” child – needed this final step in my healing. Yes, we helped Mila overcome many of her challenges. Yes, she surpassed all of our expectations. But there was one thing I forbade myself to do for a long time. Maybe out of shame, maybe out of guilt, or to protect her, or for reasons still unclear to me: I did not want the world to know that she had a genetic disorder. I did not even discuss it with many of our family members. I kept it in the hiding from a lot of people I knew. Yet, there I was, walking around 25,000 random strangers letting the world know that my child was different. And that was OK. That was more than OK…that was my very personal running leitmotif. Many people out there were running for cures, lost ones, personal records…and I was running with a bold statement about my own daughter on my shirt, finally letting go of the shame, getting an immense pride out of it. And guess what, that statement healed my soul and also made sure I would run all the way. And for once in my life, that “special-need” label did not drag me down or expect more of me…it made me take off, it took me one step above them all. And with the running came the healing. Final step of a long mourning process, first step of a great marathon race.

Thank you, NACD, and thank you, Mila.”
Roxane

And thank you, Mila and Roxane. Our NACD moms and kids are the best!

Related Links

Read Roxane’s very personal account of her marathon experience here

Read about her fundraiser here: Part 1 Part 2

It’s a Marathon – Part 2!

Yesterday I posted information about a fundraiser by one of our NACD moms. As Part 2 of the report of Roxane’s marathon training and fundraising efforts, please see her most recent note below:

Dear friends and family,

Miami Marathon for NACD FoundationI trained for 5 months. I ran in the Florida heat, through hurricane storms, on very dry days and soaked ones.

I woke up at the crack of dawn, or stayed up on a treadmill late at night.

I ran with hurt knees, injured toes, split shins, painful hips and even a broken shoulder once.

I ran easy and I ran hard. On beautiful days and some very dark.

I challenged myself to go just a little further each time. I kept telling myself I could do it, ignoring my body’s plea to quit.

And because I did all this, next week I will run a marathon, from mile one to twenty-six.

I swear I won’t fail; that part is easy. Because all I’ll have to do is remember: I am running for my daughter, to make sure other kids get to be just like her.

Thanks for your support; every dime and every step counts!
Roxane

http://www.razoo.com/story/Miami-Marathon

 

It’s a Marathon!

NACD FamiliesWe at NACD are so fortunate to be able to spend our days with really great kids and fantastic parents. Please see the link for information from NACD mom, Roxane Sarrazit, below. The NACD Foundation will use these funds to help provide scholarships to exceptional families who are not abdicating their responsibilities for their children or waiting for some government agency or school, but who are just taking care of business.

Roxane–You’re the best!

To see the full story and make donations, please visit:
http://www.razoo.com/story/Miami-Marathon

For more about the NACD Foundation, visit:
http://www.nacdfoundation.org

To read Mila and Roxane’s original testimonial, read the article here:
http://www.nacd.org/testimonials/williams_syndrome_mila.php