Growing up alongside a sibling with a disability

Freshman Jenna Eickmeier gains a different perspective of the world around her

Alumni+Erin+Eickmeier+and+her+sister%2C+freshman+Jenna+Eickmeier%2C+pose+for+a+family+photo.+

Renee Eickmeier

Alumni Erin Eickmeier and her sister, freshman Jenna Eickmeier, pose for a family photo.

Jenna grew up with an older sister with a disability called Cri du Chat Syndrome.

Jenna’s family learned about Erin’s disability when the hospital ran tests after she was born.

“Having her as my sister made me mature faster and made me realize at a young age, ‘oh, she’s not like other people,’” Jenna said.

Cri du Chat Syndrome is a rare genetic disorder caused by missing pieces of the chromosome. The condition is present from birth and can affect growth and development.

“It took [my sister] up to seven years to learn how to walk, and she doesn’t talk. She communicates a bit with sign language, but most of her signs are made-up,” Jenna said.

Due to experiences with Erin’s disability, Jenna’s parents have worked to create a camp for people with disabilities.

“My parents started saving up money to open an organization for kids with disabilities in 2003. There was a summer camp that my sister signed up for. She was 100% going to go. But, once the people at the camp figured out my sister’s abilities and how many needs she had, they told my family that she couldn’t attend because of those needs. So that kind of set us off to open up our camp,” Jenna said.

Jenna’s parents opened Camp Circle Star in 2013.

“I was around 5 years old, and my parents bought a property in Valley Mines, Mo. It was this huge four-story ranch house with a pool and lake. [They turned it into] a summer camp for kids with disabilities [that need] one-on-one care. [My favorite activities at camp are] fishing and helping out in the art room,” Jenna said.

After being open for almost 10 years, the camp continues to grow and involve other families.

“[The camp’s goal ] is to make sure that these kids still have a fun summer. A lot of the time, when school’s out, they have a hard time figuring out what to do and their schedules change. That can throw off a lot of kids with special needs. Camp Circle Star gives the kids something to do and look forward to. [I see an impact that the camp has made on others when] the parents of the kids that attend our camp tell us that [we] changed their lives, and how their kids are doing outside of camp,” Jenna said.

[The camp’s goal ] is to make sure that these kids still have a fun summer. A lot of the time, when school’s out, they have a hard time figuring out what to do and their schedules change. That can throw off a lot of kids with special needs. [I see an impact that the camp has made on others when] the parents of the kids that attend our camp tell us that [we] changed their lives.”

— Jenna Eickmeier

Jenna has lived in the same home with Erin and her brother Andrew since she was born. 

“Honestly, I don’t know what it would be like without her. I don’t know how it would be for a person to be in a family without a sibling with a disability,” Jenna said.

Jenna is eight years younger than Erin, but Erin often portrays actions of a two or three-year-old due to development.

“Erin has her computer, and she likes to go on YouTube and watch music videos. So I like just to sit and watch them with her. It keeps her entertained, and I like to be entertained by them, even if they’re little kid music videos like ‘Wheels on the Bus,’” Jenna said.

Jenna sees her relationship with her sister as the same as any sibling bond.

“We’re pretty close. Sometimes we get annoyed with each other [but in a] normal sister [way]. I help her out a lot if she needs help. But, a lot of the time, it’s the normal [sibling] thing [where] you get annoyed by your sister, but you still love them,” Jenna said.

Jenna helps Erin with tasks and activities at home like eating snacks, getting the mail, watching her while playing outside and getting ready for bed.

“It’s different when [I] have friends coming over to [my] house and not expecting [my sister to have a disability]. [It’s hard] having people that don’t know you that well come in and be in your life,” Jenna said.

Jenna believes her experience with her sister has changed her perception of life.

“It helped me realize there’s a lot of different people in the world and that not everyone’s the same. Everyone is at different spots in life. It also made me realize that other people, not just people who have Cri du Chat Syndrome, are different and have different support and needs,” Jenna said.