“When Sammy was born we had no idea she had Down syndrome until a doctor walked in and said he might have difficult news for us. Difficult news? What could it be? She might have Down syndrome they told us. We didn’t know anything about it and they made it sound terrible. So we were scared and we cried for the next few hours.
Then we stopped crying and decided to celebrate. She was a beautiful angel, a gift from God and we were going to do everything we could to make her life special. Little did we know that she would be the one to make our lives more meaningful and better! Little did we know that a Down syndrome diagnosis is a celebration!! There is nothing to fear just a lot more to love. We learned quickly that just like with all of our children there will be challenges but together with our family, friends and community we can overcome anything that comes our way.
We are especially grateful for the strong support system we’ve had from GiGi’s Playhouse for more than a decade. A week after Sammy was born in 2006, we received a visit from a parent (now friend) from GiGi’s Playhouse Fox Valley who has a son with Down syndrome. It was wonderful to not feel alone and learn what we could do to give our daughter the best life possible. From that moment, we were at GiGi’s Playhouse often and we eventually led the Teen Tastic group. Sammy’s older siblings, other family members and many friends also often volunteered there and learned so much from those experiences.
It wasn’t her Down syndrome diagnosis that created the biggest challenges in our lives, it was the fact that we could lose our precious Sammy. In 2016, a rare virus attacked Sammy’s heart and for two weeks were reminded that she was the sickest child in the entire children’s hospital and that she had little chance of survival. With miracles and a caring medical team she survived but not without lifelong challenges. Sammy has permanent scars all over her body from the numerous open heart surgeries and the many devices that were attached to her body to help keep her alive and lost her ability to walk independently after severe gangrene caused her to lose her toes.
It was devastating to us, but Sammy never gave up and still works hard every day to try to get back to normal as much as possible. The doctors, nurses, therapists and staff fell in love with her fighting spirit and her ability to love and be kind despite her pain and discomfort. She is often called “Super Sammy” because of those super abilities. “Super Sammy” also has “Super” friends and teachers and for that reason we now celebrate Pioneer Elementary School Kindness Day every year in our Bolingbrook community. The proclamation was first introduced on May 18, 2018 by our Mayor in recognition of the overwhelming kindness our daughter received from classmates, teachers, staff and her community when she returned to 5th grade after facing those tremendous health challenges.
Now Sammy is an Ambassador for Children’s Miracle Network/Lurie Children’s Hospital, the Ronald McDonald House Charities of Chicagoland & Northwest Indiana, Make-A-Wish Illinois and a local celebrity as the co-founder of Bolingbrook Kindness Day in our community. She loves being in the spotlight and helping others. You should see her big smile when we are about to drop off a gift to a local family, neighbor, business owner or when she has a photo session, video shoot or speaking engagement. It is priceless-just like all of our children with Down syndrome are priceless.
Thank you to GiGi’s Playhouse and all of you who celebrate our children with Down syndrome!”
Written by Mom, Marissa
To learn more about Sammy’s story and Kindness Day you can visit our Pioneer Elementary School Kindness Day Facebook page and Pioneer Elementary School Kindness Day YouTube Channel (https://www.youtube.com/channel/UCv4fgRzFtdFXKqizAfQ4rZw ) or visit any of these links below.
Videos and Articles about Sammy and Kindness Day:
All for Sammy Lurie Children’s Hospital https://www.youtube.com/watch?v=m0vA-Ue6BZo
Lurie’s Patient Spreads Kindness https://www.youtube.com/watch?v=R243MI3PIn4
Meet the Champions https://www.youtube.com/watch?v=Ye72JaChh4g
Bolingbrook Resident Featured in Lurie Children’s Campaign https://patch.com/illinois/bolingbrook/bolingbrook-resident-featured-raise-money-lurie-childrens
Fountaindale Library Kindness Day Celebrations https://www.fountaindale.org/2020/05/13/welcome-to-kindness-day-2020/
Bolingbrook Celebrates Kindness Day in Honor of Lurie Children’s Patient https://luriechildrens.childrensmiraclenetworkhospitals.org/bolingbrook-celebrates-kindness-day-in-honor-of-lurie-childrens-patient-sammy/
Bolingbrook Celebrates Kindness Day 2020 https://patch.com/illinois/bolingbrook/bolingbrook-celebrates-kindness-day-may-16-2020