Why We Step Up: Team Ella’s Love

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Hello everyone! We are Dan and Toni Agnew and have a 2 year old daughter, 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 a little back story as to how we came to be here St. Louis, Missouri.

We were in our early thirties, thriving, enjoying our freedom and life to its fullest when our paths crossed at the Denver airport. We met in the terminal awaiting a flight to St. Louis, which neither of us lived at the time.

Our souls collided and while we had spent only 3 days together over a period of 3 months, Dan proposed and we found ourselves living in Honolulu, Hawaii enjoying the turquoise waters and sandy beaches. Exactly one year to the date that we met in the airport we were married and expecting our first child.

Dan was promoted in his career and was to be moved 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 lives 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 with the recommendation of our doctor in St. Louis we reached out to the Down Syndrome Association of Greater St. Louis (DSAGSL). After reaching out 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.  We were paired up with a Family Support Coordinator who provided resources, literature, a big heart, an ear to listen, as well as support to prepare us for Ella’s arrival.

Our daughter Ella arrived 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, and it was hand delivered by Christy Klaus personally while Ella was in the NICU. We welcomed her home on Mother’s Day. We were scared but knew that we could conquer anything with our great love for each other.

Ella was only a few months old when we signed up for our 1st 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 dollars! This year will be our 3rd year participating in the Step Up Walk and we have increased our team donations and presence year over year.

Stepping Up for Down Syndrome means the world to our family. We step up in honor of our daughter as well as all individuals with Down Syndrome. This event provides 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.

Ella is now 2 years old and is working very hard to crawl and/or walk! Her favorite word is “dada” who also happens to be her favorite guy!  It’s been a busy 2 years of great things, growth, and changes. Ella works very hard at therapy 3x per week, enjoys attending therapeutic play groups, stroller rides, and nursery rhymes.

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 back we can connect all the dots and it’s really quite magical!! We can now see that St. Louis was the perfect place for our family. Ella is a miracle and we thank our lucky stars everyday 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 with us!!

See you all at the walk!

Toni & Dan Agnew (Ella’s parents)

Team Ella’s Love

Derek Baker’s Nashville Bar Crawl!

Today’s post comes from Valerie Baker, an awesome mom who came up with a fun and creative way to celebrate her son Derek’s 21st birthday. Read more of what Valerie had to say about the exciting weekend!

How does a mom adequately celebrate the 21st birthday of an amazing young man with Down syndrome, who lights up the world of everyone around him and dreams of being a pop star?  She and 24 others from Missouri, Kansas, Illinois, and New York City, drive or fly to Music City (Nashville TN), home of Broadway Street and the best Honky Tonks anywhere!!!

Saturday night we enjoyed live music at the Grand Ole Opry.  At midnight, Derek ordered his first beer – Bud Light, of course!  Dilly! Dilly!  The day of his birthday, Derek and 20 people who love him donned their “Derek Baker Nashville Bar Crawl” t-shirts and began his celebration on April 8th, 2018 around 11am.  Our goal?  To get Derek on 21 Stages in Nashville.  Little did we know what was in store for us!

On Stage 1, the band and crowd sang “Happy Birthday.” On Stage 2, we met a fantastic up-and-coming artist, Amber DeLaCruz, who had Derek on stage for almost 10 minutes and tagged him in an Instagram post on April 11th saying, “This guy stole my heart Sunday #happybirthdayderek.”  On Stage 12, Derek took over the keyboard and got the crowd in a frenzy!  11 hours later,  the final 11 of us enjoyed the 21st stage!!!

What an incredible journey it was! What a blessed boy Derek is! And the rest of us also,

with such amazing family and friends! We collected lots and lots of laughs, hundreds of hugs, 3 drum sticks, 2 back up dancers, several guitar picks, a light stick from Bridgestone (according to Derek, a light wand), a $100 bill and forever memories! The day was beyond my imagination of all it could hold for Derek!  PRICELESS!!!