In honor of World Down Syndrome Day, we share the story of Brady Neisen of Fowler, Illinois and his family. The date for World Down Syndrome Day being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.
At 23 years old, Brady Neisen of Fowler, IL enjoys many of the same things other people his age do – going to concerts, spending time on the family farm and going out to eat with family and friends.
“He loves it when people, especially girls, take him to restaurants and spend some time with him,” says his mother, Lisa. “I think he’s ready for the spring weather to get back outside again. He really likes riding on the golf cart and being busy on the farm helping Jeff (Brady’s father).”
Brady was born with Down syndrome. According to worlddownsyndromeday.org, Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socioeconomic lines in approximately 1 in 800 live births.
And while the world has learned a lot about Down syndrome during Brady’s life, not everyone was as well informed 23 years ago.
“Brady was born in October of 1998. Our oldest, Montanna, was three years old when he was born,” Lisa said. “It was a complete surprise for us that he had Down syndrome. It was a shock. We just really didn’t understand Down syndrome or know what it was. Our labor and delivery nurse, Jennifer Pugh, told us everything would be ok. She said ‘I have a son, Matthew, he’s three and he has Down syndrome.’ They brought Matthew to our room so we could meet him, which gave us tremendous hope and reassurance.” Lisa explained, “God has a mysterious way of putting the right people in your life at the right time. This was definitely one of those moments.”
Shortly after birth, Brady was airlifted to Children’s Hospital in St. Louis for more specialized care. According to Lisa, about half of babies born with Down syndrome have a heart defect that requires surgery. Fortunately, Brady wasn’t in that group.
“It was a very emotional time. I can remember before we left for St. Louis, Montanna came into the room and Jeff and I were crying. She came up and just hugged me,” Lisa said. “Going to St. Louis was probably the best thing that could’ve happened because the nurses talked to us a lot about the different babies they saw in the neonatal unit. Brady was 9 pounds 6 ounces and there were babies in the unit who were only two or three pounds.”
Outside of the expertise of the medical team, there were very few resources available to parents locally to help educate them on Down syndrome.
“We had a couple families reach out to us who had a child with Downs. We got close to them and that was helpful,” Lisa said. “But, there really wasn’t anything else, which is why I decided to start the Down syndrome support group.”
Lisa has been with Blessing Health System for over thirty years and her boss at the time, Ann Dickson, and the Blessing Team were supportive of her efforts to start the group.
“The support group has been a passion of mine because when you have a baby with Down syndrome, it’s just a different world. There’s a poem called Welcome to Holland and I feel like it’s a perfect description of being a parent of a child with Downs,” Lisa said. “It talks about the fact you’ve packed for a trip to Italy but you end up in Holland. You were planning on going to a very fancy place and you end up in a completely different place, but what you find out is the new place is okay. If you spend your life mourning the fact you didn’t get to Italy, you will never be free to enjoy the very special things about Holland.”
Unfortunately, with the pandemic, the support group has been unable to meet in person.
“I’m hoping we can meet again soon because it’s very rewarding to see all the families and help new parents,” Lisa said. “The hospital knows that they can give my information to any parent of a child with Down syndrome and I’m willing to drop what I’m doing and meet with them to help. There’s just so much to learn. One of the main things I tell parents is you need to concentrate on their abilities, not their disabilities. Brady didn’t walk until he was two years old. And when he started walking, it was a huge milestone and we celebrated it and every milestone because it’s such a huge achievement.”
Lisa says while she helps teach parents, Brady has been teaching so many in the community throughout his entire life. He has also taught their family about unconditional love, acceptance, and not taking anything for granted. In addition to his parents and grandparents Pat and Melvin Genenbacher, Brady’s siblings Montanna, Lydia and Jordan are his biggest advocates.
“Our community has been great with Brady. No matter where we go, people will always yell ‘Hey Brady’ and sometimes I don’t even know who they are,” Lisa said. “Communities have become more inclusive of people with Down Syndrome or any disability. Brady has really been sort of at the forefront to teach us that everybody is dealing with their own battle, so just be kind to people and treat each other with respect and dignity.”
Still, Lisa says, while the world is improving when it comes to inclusion, there’s still work to be done.
“One thing that really irritates me is the “R” word,” Lisa said. “People use that word and it’s really hard. I think it’s just a lack of awareness and they don’t realize how hurtful that word is.”
“But, the society is improving. Years ago, when a child had Down syndrome, they would put them in an institution. They didn’t know to do early intervention with speech, physical and occupational therapy to improve developmental delays,” Lisa said. “Now, kids with Downs can go to schools in their own community. It’s important for them to be part of their community and for the community to be inclusive and to learn more about people with disabilities.”
While it wasn’t necessarily the path they were expecting, Lisa says her family wouldn’t trade their journey for anything.
“If I were talking to a new parent who had a child with Down syndrome, I would tell them that I know this isn’t what you were expecting, but you will experience a lifetime filled with pure love and wonder. There will be challenges, but you will learn invaluable life lessons and meet the most amazing people and families- all because of your child with special needs,” Lisa said. “Life is never boring in the Neisen household because Brady is always up to something. He keeps us on our toes.”
“I believe that God has a plan and that he only picked you because he knew you could handle it,” Lisa said. “He puts those special people here because he knows how much they contribute to making our lives complete.”