They’re stepping up for Down Syndrome and you can too

The Down Syndrome Association of Greater St. Louis will be hosting two event to raise funds and awareness of down syndrome in the St. Louis area – “Run for 21” and “Step Up for Down Syndrome” – on Sunday, June 2nd in Forest Park. Here is a first hand story by one of the families participating. More information on the event is after their article.

Hello everyone!

Our names are Toni and Dan Agnew and we have an amazing 3-year-old daughter named Ella with Down Syndrome. Bear with us as we head down memory lane for just a moment, because we feel that it is important to give you the back story of how we came to be in St. Louis.

We were both in our early thirties enjoying our freedom and living life to its’ fullest. Dan had recently moved to Hawaii from Montana for a work promotion, and I was living in Iowa after a prolonged West Coast adventure. Thanks to a perfect alignment of the stars our paths crossed at the Denver airport. We met in the terminal awaiting the same flight to St. Louis. Dan was on his way for corporate training and I was returning home from a weekend in the Rockies.

It was love at first sight! Our souls had collided. Even though we only spent 3 days together over the next 3 months Dan proposed to me in Montana. Shortly after that we found ourselves living in Honolulu, Hawaii enjoying the turquoise waters and sandy beaches. On the one-year anniversary of our collision at the Denver airport we were married and expecting our first child.

Since we never do anything slow we decided to keep the momentum going and Dan accepted a promotion to the corporate headquarters in St. Louis. I resigned from my position with the Muscular Dystrophy Association of Hawaii, our home was packed, and we were on a flight back to the mainland to begin our next chapter.

Just one day after arriving in St. Louis we received a call from the genetics doctor in Hawaii sharing the news of Ella’s diagnosis. Of course, it was a shock to us initially, but there was NO WAY we were giving up on our daughter. We were scared, uncertain, and facing some very big potential health issues. We had to let go of the initial idea of what our lives would be and open our hearts to something we hadn’t considered. Our biggest fear was not that she wouldn’t be loved enough by us or that she had Down Syndrome, but how the world at large would treat her.

With the recommendation of our doctor in St. Louis we reached out to the Down Syndrome Association of Greater St. Louis (DSAGSL). After speaking over the phone, we made a visit to their office where we found a team of compassionate and caring individuals ready to help and guide us on our new journey. They paired us with a Family Support Coordinator who provided resources, literature, a big heart, and an ear to listen to help us prepare for Ella’s arrival. We knew very little about Down Syndrome at the time and knew that we needed to educate ourselves for Ella’s unique life.

Our daughter Ella made an emergent arrival 6 weeks early and spent over a month in the NICU where she continued to grow, thrive, and defy all odds. The DSAGSL gifted us with a welcome basket for our newborn baby girl that was hand delivered by Christy Klaus while Ella was in the NICU. We were so touched by her heartfelt visit. We cried. We laughed. We hugged. In that moment we knew everything was going to be alright. Thanks to Ella’s perfect timing her doctors gave her a clean bill of health and let us take her home on Mother’s Day. Good luck topping that gift Dan. When we got home we were nervous and overjoyed, but we knew that we could conquer anything with our great love for each other.

During Ella’s first few months at home we decided to try and give back to the organization that had given us so much, so we signed up for our first Step Up Walk. We didn’t have much time to prepare or fundraise, but we tried our best. Within just a few weeks we raised over $1000! This year will be our fourth year participating in the Step Up Walk, and thanks to the love and support of our family and friends we have increased our team donations and presence year over year. This year the DSAGSL has decided to combine the Step Up Walk with the Run for 21 into one great event. Dan isn’t quite back to his running shape just yet so he won’t be pushing Ella in a stroller for the 5k. Maybe next year.

Stepping Up for Down Syndrome means the world to our family. We look forward to creating our team, fundraising, and rallying our community to get involved and make a difference.

We step up in honor of our daughter as well as all individuals with Down Syndrome. This event provides us the opportunity to give back to the DSAGSL for all they have done for our family and community. They have supported us through awareness, advocacy, friendship, education, activities, playgroups, and so much more. We have made many invaluable friendships along the way and we are very grateful. While having Down Syndrome does present extra challenges, it doesn’t change the fact that she is a human being capable of an amazing life. She may need some extra help along the way to support her extra chromosome, but who doesn’t need help?

Ella is now 3 years old and is working very hard to walk and talk. It’s been a busy 3 years of joy, laughter, challenges, growth, and changes. We wouldn’t have it any other way. She keeps us on our toes every day and spreads love and joy to all the people she meets.

Ella works very hard at therapy, loves to ride her tricycle, enjoys reading books, and social interaction with her peers. She will be attending pre-school in the Fall and has many milestones to meet in the coming years. It has never been a question of “will she”, it is the understanding that “she will” in her own time.

We are all so grateful to have one another and couldn’t dream of a better life. Isn’t it amazing how the Universe is always preparing us and setting us up exactly where we should be? We don’t always see the big picture when we are busy living it day by day, but when we take the time to be present and reflect we can connect all the dots and it’s really quite magical!! We now know St. Louis was the perfect place for our family. The support we receive from the DSAGSL and our community has helped us make Ella’s life the BEST.  Ella is a miracle and we thank our lucky stars every day for her presence in our lives and for choosing ‘us’ to be her parents and teachers.

When your big heart is choosing to donate to a charitable organization this year, let this be the one! Any amount makes a difference in the lives of so many. The services the DSAGSL provides for families are life changing and invaluable. We are very grateful, and we hope you STEP UP and/or Run for 21 with us!!

See you there!

Toni and Dan Agnew, Team Ella’s Love