The video below is a 50-minute Zoomed, Facebook Live discussion that was featured here on World Down Syndrome Day 2021 with parents and their children with Down Syndrome: how they contended with the pressure to abort; their brave embrace of their new lives with Down Syndrome; and the activism and awareness they are involved in with Louisiana law, schools, health care, parental resources, and more. Their faces brighten as they talk about the impact their children have made in their own lives and the lives of others, including remarkable stories about becoming Homecoming Queen and the recent piece of legislation named after one of the children, the Dustin Gary Act. Each of these parents were told all about the negative situation they and their children would be in and how their child, while in the womb, would be “incompatible with life” at birth to varying degrees. But as Dr. Kathy Allen, Director of Louisiana Black Advocates and moderator of this discussion, so inspiringly said:
“One thing that I have learned is that there are alot of things you can measure while a child is in the womb. I was told that Joshua’s femur is shorter than it should be (his thigh bone); that he has a hole in his heart; he is smaller than he should be for his gestational age. Those were all things you can measure. But a child’s ability to grow and to learn and to contribute cannot be measured while they are in the womb. The only way you can see that happen is to choose life for them, to give them life.“
Sheila Gradney hopes this video helps other moms. “I went into early labor at 5 months. [The doctor who did my amniocentesis] heard I was in the hospital so he called my doctor to say it was not too late for me to have an abortion at 5 months pregnant. My child was here. I want people to know, mothers, do not listen to what these doctors are telling you – [it’s] whatever’s easier for them. You know, they should be helping you go through this and giving you information, because I didn’t know anything about Down Syndrome.”
And Liz Gary emphasizes her life of advocacy for her son and others with disabilities, “I’ve had barriers and challenges since the day he was born but I break those barriers down and continue to move forward and will not accept no. And I will not accept when they say ‘he cannot do this, he cannot do that’ no we will find a way to make this work. And as a result there has been tremendous amounts of lives touched by Dustin because of him having inclusion. He’s now in a Catholic school in Covington, a high school, and the kids there are phenomenal with him…. Dustin is part of that brotherhood.”
You can find the bios of each of these mothers and their children after the Louisiana Resources list below.
If you or a family member has received an “abnormal” prenatal diagnosis or have a child with disabilities, there are bountiful resources for you to find help and community support. You are not alone, please reach out!
About Liz and Dustin Gary:
Liz Gary lives in Mandeville with her husband, Mike, and three children. Dustin is the youngest and why Liz became an advocate for individuals with disabilities. When Liz was 7 months pregnant with Dustin, she was told by several doctors that Dustin would die in utero or upon delivery. He had complications that she was told made him incompatible with life and that he had less than a 1% chance of survival. Dustin Raphael Gary was born on Aug. 24, 2002.
Liz was often asked by Dustin’s Early Steps providers if she would be willing to talk with other parents who were struggling with their children’s diagnosis. She did that voluntarily for 3 years. Then in 2006, when Dustin entered a traditional day care center, she started working as the Outreach Coordinator for Northshore Families Helping Families on a regional level. In 2008 Liz wanted to get even more involved in advocacy, so she applied to be a participant in Partners in Policymaking, a national leadership program and became the coordinator. In the 11 years of working there, she was able to educate, guide and empower more than 300 individuals on systems change.
Liz also started advocating at the state level meeting with legislators both locally and traveling to Baton Rouge to advocate for systems change. Liz has worked with legislators throughout the state on legislation that impacts people with disabilities. She has been part of many acts that have become law over the past 12 years.
In 2020, Liz started working as the Policy and Advocacy Coordinator for LEND (Leadership Education in Neurodevelopmental and Related Disorders) for the LSU Human Development Center. The LEND training program’s purpose is to improve the health of infants, children, and adolescents with disabilities. This program provides long-term, graduate level interdisciplinary training as well as interdisciplinary services and care. This has given Liz the opportunity to educate, guide and empower the lives of those professionals who will be a part of working with individuals with disabilities.
Liz has served on many boards, committees, and non-profits over the past dozen years. She continues to serve as much as possible as a fully engaged member. She also attends conferences and webinars regularly because she feels that there is ALWAYS something that she can learn. She advocates to ensure that her son has what he needs, but her bigger goal is to ensure that ALL advocates voices are heard whether they can express their needs are not.
Dustin Gary is now 18 years old and is a junior at St. Paul’s Catholic School in Covington. He is well known on the campus, not only the faculty but also by the students. He has been embraced there and is a part of the brotherhood of the school. He is very social and loves to visit with everyone at lunch. He will tell you that his favorite subject is “lunch.”
St. Paul’s has given him a religious background that has become very important to him. He loves to offer up his intentions in religion class and looks forward to when it is his turn to lead the prayers. He loves going out to eat and has so many supportive peers. He has been able to have a wonderful social life as a teenager. When he is not playing his Xbox one, he enjoys being outside working in the yard. Dustin has a collection of over 180 paint brushes.
The Supported Decision Making/ Dustin Gary Act became effective in August 2020. Dustin was able to Facetime with Gov. John Bel Edwards as he signed the Act into law. Dustin was thrilled to be able to have Gov. Edwards sign a paint brush for him and will have that as a memento of the signing of the 2020 Dustin Gary Act. Dustin is presently working with Ashley McReynolds at The Arc of Louisiana to create his Supported Decision Plan. They meet regularly to decide what is important to him and who will support him with those goals.
About Sheila and Courtni Henry:
My name is Sheila H. Gradney. Anthony Gradney is my husband, and we are the proud parents of Courtni Celena Henry. Courtni is our blessing and our sunshine.
Everyone who meets Courtni falls in love with her. She is very outgoing; some people call her a social butterfly. She is a real 20-year-old young lady.
I was 41 years old when I had Courtni. The doctor who did my amniocentesis wanted me to have an abortion. Thank GOD for my faith; He will always guide our footsteps. I was five months pregnant when I went into early labor. I was put on bed rest until I had Courtni. The doctor who did my amniocentesis called my doctor to tell her it was not to late for me to have an abortion at five months. Sad!
Courtni was born on May 25, 2000. She was born with a heart defect and came home with a heart monitor. Courtni had open heart surgery at 5 months old. After her surgery Courtni had a normal childhood. She excelled in everything she did and still does.
Courtni started school at 3 years old and made her Holy Communion and her Confirmation. It was a hard journey for her because they always wanted her to wait, but I didn’t wait or stop until she did it all. Since Courtni’s first year included a lot of doctors appointments and her open heart surgery, I gave her a big birthday party for her first birthday with so many people praying for her.
I asked GOD to give her a senior year to remember, and he did. He let her become Homecoming Queen at BCH. Courtni loves to dance, talk on her phone, play on her IPad, and cook with assistance. Every year I let her decide what she wants to do on her birthday. This year she will be 21 years old, and ,she wants to go to the casino but with COVID-19 she has to do something else and we will do the casino another time. It is not an easy journey, but it is well worth it. I would not change anything.
About Kathy and Joshua Allen:
Watch this short video featuring Dr. Kathy Allen’s testimony. She talks about the moment she heard the prenatal diagnosis of Down Syndrome, her fears and comfort amid her decision to choose life, and how this caused her reflection of and path to healing from prior decision at 19 years old to abort Joshua’s sibling.