Why I’m Fundraising for World Down Syndrome Day and Why It Matters

Five years ago, I sat in front of my computer feeling scared, confused, and lost. I had just been discharged from the hospital after giving birth to my second son, Alvaro. He was unexpectedly born with Down syndrome.  

I knew very little about Down syndrome. What little I thought I knew filled my heart with fear and sadness.   Questions crowded my waking moments: Where do we go from here? What do we need to know? Would my baby look like me? When would he walk? When would he talk? What kind of other challenges would we have to face? How would I work through the fear and sorrow? How long would I carry the deep guilt I felt for feeling so brokenhearted? How do I come to see the baby with Down syndrome in my arms as the same baby who grew in my womb?

I wanted and needed to connect to other Moms. I needed to see what other babies looked like. I needed to know what other Moms were doing, how they were living or surviving with the news. I needed hope and comfort from someone on the same journey as I.

I stumbled onto a new birth group forming on Facebook. This new group was formed so that other Moms who had babies with Down syndrome could connect, share experiences and information, and bond over this shared journey of being entrusted with a baby with Down syndrome. This initial group of 150 women became the first group of what is now referred to as the Rockin’ Moms. 

As we connected and grew with information and support- it became apparent that there was a need to for new parents who have a child with Down syndrome to be provided with the things we had found. Connection to other families, encouragement and support, unbiased and up-to-date information, and a realistic and encouraging view of what a life with a child who has Down syndrome was really about.

And so the Down Syndrome Diagnosis Network [DSDN] was formed by some of the members of the Rockin’ Mom’s group. Five years later, over 4,500 families are connected by the DSDN. 

I am not be exaggerating in the least when I say the Rockin’ Moms were a life line to me in so many ways. They supported me through my grief and gave me permission and space to feel various emotions without judgement. They shared their knowledge and experiences of countless conditions, ailments, and challenges common to kids with Down syndrome. They shared their hearts, their fears, their hopes, and their love. My family & I are all the better for these amazing women that are part of my Rockin’ Moms tribe.

March 21^st, is World Down Syndrome Day [WDSD]. WDSD is a global awareness day which has been officially observed by the United Nations since 2012.

Down Syndrome International (DSi) encourages people all over the world to choose their own activities and events on WDSD to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.

This year, for WDSD, my family is choosing to raise awareness by fundraising and donating to the Down Syndrome Diagnosis Network. We want other families to have the same support, connection, and information we did.

We no longer fear the impacts Down syndrome has in our lives. Instead we’ve come to realize that we are indeed the lucky few who get to experience the joy, connection, and community that having a child with Down syndrome brings.

Will you partner with us to bring hope and support to new families with a child with Down Syndrome?  

Here are ways you can get involved:

1)  World Down Syndrome Day Fundraiser Celebration at Panera- March 21^st. Click this link for details.

2) Show Your Support by Wearing a WDSD Button! Click here for more details.

3) Make Donation to the DSDN via my Fundraising Page. You can donate by clicking here!

4) More opportunities to be announced! (Teaser- I’ll be selling personalized/ custom travelling mugs for Mother’s Day and / or Teacher’s Appreciation Week!)