Living With Down Syndrome: Erin’s Blessing

Photo by: Robin Winkle

Erin Winkle is a 23-year-old woman with a big dream.  Just like any typical, young woman, she strives to achieve her goals.  She is studying at a community college, and she aspires to have a big, beautiful wedding when she marries the man of her dreams one day.  The only difference between Erin and your typical dreamer is that Erin has Down syndrome (DS). 

For Erin, living with DS is not a setback; it’s a blessing. “I am blessed to be who I am. I bring out people’s true colors. I teach people about Down syndrome too; I gave my mom’s biology class a speech on Down syndrome. I’m a really good teacher!” Erin said. Her mother once told her that when she goes to heaven, her body will be restored and she will no longer have DS. That’s not what Erin wanted, though. “That would be sad, because then I wouldn’t be me,” Erin said.

According to Kidshealth.org, DS is a condition in which extra genetic material causes mental and physical delays in a child’s development. DS is the most diagnosed genetic birth defect in the world; it affects one in every 800 babies. DS is a random mutation that is not caused by anything the parents did or didn’t do.

An extra 21st chromosome appears in each cell; therefore, it is impossible to cure DS because you would have to change each and every cell. This extra chromosome causes extra chemicals to be produced, which confuse and harm normal body functioning. The extra genetic information causes the slight deformities that are characteristic of all DS individuals.

The medical problems and physical features of DS vary widely from child to child. There is a huge misconception that once a child is diagnosed with DS, they are permanently handicapped and unable to function regularly. DS children are capable of functioning and engaging in the real world; having DS doesn’t mean that the child can feel any less emotionally, mentally or physically. While there are different levels of DS, some higher functioning than others, all have feelings.

Erin is a five-foot, round-faced young woman with an adorable little nose. Her long, brown hair accents her brown, almond shaped eyes beautifully. Erin lives in Monticello, Ind., with her parents, four brothers and one sister. “All six of my children are very close. They treat each other as their best friends. Erin is no exception to that. She gets along with her brothers and sisters very well; they adore Erin.”

Erin knows a lot about DS. She can look at other high-functioning DS children and say, “They are just like me.” She can look at those with severe DS and say, “I’m not like them.” Erin is very aware; she knows what’s going on in the world around her. She is delayed cognitively, not socially or emotionally.

Erin is very gifted artistically. She draws pictures of an extravagant wedding she claims to one day be her own. She finger-paints colorful flowers and butterflies. Not only does she use her creativity in paintings, but she uses it on stage as well. “My dream is to be a famous performer. I love to sing and dance on stage,” she said. Aside from being a cheerleader in high school, Erin choreographs dance routines for fun. She is also passionate about working out. In fact, Erin’s personal trainer says she gets more out of the workouts than Erin does. “I’m always so inspired by Erin. She constantly has a smile on her face and is always striving to push herself. She loves exercising on the steps. She always incorporates her own little dance moves into the motions. I’ve never had a more motivated client,” said Maddisen Kies, a certified personal trainer at Sculpture’s Fitness in Monticello, Ind.

Robin Winkle is Erin’s 49-year-old mother. She thinks very highly of Erin. “Erin is the best thing that’s ever happened to me; she’s my best friend. We do everything together. We shop together; we get our nails done together; we go to the movies together; we even have late night girl talks. She’s my best friend… Erin still lives here at home, and she will until she passes. I wouldn’t have it any other way,” said Robin. While she sees her daughter as a wonderful blessing, she is hurt by the way society views individuals with DS. “I just want the world to see Down syndrome babies as people first. They are people who just happen to have a defective gene. They should not be defined as a Down syndrome person as if they were an alien from another planet and not human at all,” said Robin.

Photo by: Jordan Gutterman

“We have had oral hygienists refuse to clean her teeth, an orthodontist tell us it would be cruel and a waste of time to put braces on her, and a kindergarten teacher refuse to teach ‘kids like these.’ I have even had religious education teachers wonder if she could actually receive first communion or confirmation. It is amazing the amount of prejudice that exists. It breaks my heart,” said Robin.

Robin recently looked up “Down syndrome” on Twitter and was disgusted to find so many derogatory remarks. “One of them stated ‘you run like a Downsy!’ Another one said, ‘you are so retarded you must have Down syndrome.’ The term Down syndrome has become the term used for everything wrong with a person. It truly hurts to see our society sink so low,” said Robin.

Erin’s medical concerns related to Downs are low immunity, low levels of Vitamin D, hypothyroidism, severe endometriosis, allergies, nasal congestion and slight hearing loss in her left ear.

Still, a general doctor in Erin’s community has “Never seen such a high-functioning case,” said Dr. Philip Hassan. “Erin is a very special young woman. I’ve never seen a Down syndrome child be able to think the way Erin thinks, talk the way Erin talks, or interact the way Erin interacts. It’s quite miraculous. At her age, most Down syndrome patients aren’t as physically and mentally strong as Erin is. She legitimately understands the world around her,” he said.

Despite it all, Erin is very confident and loves who she is. She’s not afraid to just be herself. Erin is beloved throughout her community. Her high spirits and genuine personality are very admirable.

“When I first learned Erin had DS, my doctors told me my daughter would die at 25. Well, Erin is 23, and she’s going strong. They told me that she would never read or write, and Erin is a spectacular writer. They told me that life would be miserable with her in our home, and it’s not. They said she would never speak well or be able to do much of anything, and she does,” said Robin. Erin never stops learning. There is no plateau for individuals with DS. They just may take a little longer learning the task or skill involved. “The only problem we see as parents is how do we make her wishes come true. We love Erin very much and are happy to have her in our family. We feel like we have been given a blessing from heaven, and we have been assigned the guardian of this blessing,” said Robin.

-Jordan Gutterman