On Saturday, October 21st, the Grand Strand Down Syndrome Society will celebrate its Fifth Annual Buddy Walk® event at Grand Park at Market Commons in Myrtle Beach, SC. Hoping to raise $40,000 this year, the GSDSS relies on its many team captains to help them raise funds for valuable programming offered to individuals with Down syndrome and their families. We were pleased to connect with team captain Vona Shodja, who was kind enough to share her family’s story.

“Zahra Zoë Shodja (aka ZeeZee) is a sweet and feisty girl, now almost 9 months old. She absolutely positively adores her older brother, Mikah. Whenever he is around, she lights up! I watch her constantly try and mimic him – so when he is dancing around, she is dancing around. When he is giggling, she just loses it! They love to watch Dinotrucks on Netflix together. I am not sure what it is about this show in particular, because it seems to be the only thing we put on tv that gets her attention. I wonder if it is the colors or the shapes of the characters, perhaps. She also loves for us to read or sing together. I haven’t noticed that she has a favorite book or song, but she likes to snuggle up together and make eye contact while doing those things.

ZeeZee works hard at her therapy appointments and excels at reaching and playing with rattles and toys, is a very messy but eager eater, likes to drink water from a cup, and she is starting to learn to sit up on her own – though she gets pretty mad when we try to make her crawl! We have lots of faith that she will get to that before we know it. She constantly jabbers, ‘Dada dada’ and when in her activity bouncy chair, she is always rocking and rolling!

This girl makes us smile multiple times every single day. Whether it is because she looks me in the eye and grins, or when she pats me on the shoulder while I hold her, or when she tries to gnaw at my chin, when I notice that she is curious and reaching for things to try out…I cannot explain (but if you are a mommy you already know), just how proud I am of her, and also how grateful I am to be living a life with her in it. She has already changed so many lives and she isn’t even a year old yet.

Our team name is #DownWithZee. We named it after the slogan we started when she was born, which we actually turned into a shirt business, which has essentially morphed into a Down syndrome/ humanity advocacy mission! (Our website is www.downwithzee.com) Basically, we believe that when people connect and start conversations, they are able to release any fears they may have about people who are “different” from them, and actually become meaningful to each other’s lives.

This is my fourth time participating in the Grand Strand Buddy Walk (though it is the first time our team had this name). Originally I just participated because I wanted to. I have always had a place in my heart for people with Down syndrome (as a teen and in my 20s I volunteered with lots of kids with varying abilities). The next time I walked I decided to honor a friend of mine who lives in Pennsylvania who had a son with Down syndrome. The third year I still wanted to honor Evan, but lo and behold I was also pregnant and had learned only days before the walk that my baby would likely have Down syndrome, too. This year I walk for all humans! While the money we raise is specifically being raised for Down syndrome, in my heart the purpose is for every human to be allowed a life full of love, acceptance and dreams that come true! I would love for anyone interested to join our team or help raise money on ZeeZee’s behalf. So far we have used Facebook, our website’s blog, or direct conversation to invite people to be involved and some of those people have helped spread the word. I would say the most successful way for us to fundraise so far has been via Facebook. People who already know (or know of) us and love us are very gracious and compelled to give. We have promised that when we sell shirts from our site during September and October, a percentage of those sales will get donated to the cause.

I hope our team members really become educated about Down syndrome, and help enlighten the rest of the world to open their arms and hearts to some very beautiful gifts that people who have DS are! Generally I tell people that this walk is a fun event where we can gather, learn, communicate, teach and advocate. The walk itself is short and simple, but a lot of special moments and conversations happen during it. Last year my team was pretty small (me, my husband, our son, and our babysitter)…and I was super pregnant! We arrived at the event, cheered everyone on during the awards ceremony, and walked while connecting with new friends. After the event we enjoyed time on the playground nearby! This year we may have a similar experience – although now Zee is here so the experience may reach a deeper part of our hearts than even before.

Last year during the walk a girl started walking and talking with us. She was very sweet and began to inquire about the baby in my belly. Since I had recently gotten the news that ZeeZee may have Down syndrome, it was one of the first times I told anyone about the probable diagnosis out loud- especially to a stranger. Even though we were a bit fearful of what was to come, there was still an overall sense of gratitude and peacefulness that day when I spoke about it out loud. The girl wished us well and life went on. Later, after ZeeZee was born, she found us again as we became somewhat more popular through our #DownWithZee campaign and as we became more involved with the Grand Strand Down Syndrome Society. She was so excited to see the baby who had been born since our walk. It felt very special to me to be remembered!

To a new family in the Down syndrome community, I would say if you are interested in participating in the Buddy Walk®, just do it. There are no huge overwhelming expectations, every dollar counts, and our kiddos are worth it! When it comes to fundraising, just get creative, have fun, and ask everyone…ya never know who will respond. I have found that most people who have met ZeeZee have a story of their own about someone they love with DS. So odds are in your favor!”

Thank you, Vona, for sharing your family’s story! We hope you have a wonderful time at the 2017 Grand Strand Buddy Walk®!

This post is a part of our ongoing Walk Team Spotlight blog series, which profiles Down syndrome walk teams sharing their unique backstories, as well as fundraising, recruitment and networking tips! Check back for future posts in this series coming soon. Submit your story ideas to: support@ds-connex.org.