Thankful and thriving: An Emporia family reflects on gratefulness in struggles

Ella is also a local personality. The smiley toddler is the star of the Facebook page “Ella’s Tribe,” which follows her journey growing up with Acrofacial Dysostosis-Nager Type, also known as Nager Syndrome.

“It’s a craniofacial disorder that basically just affects the bones at the face and with her condition also affects extremities,” Kayla explained.

Nager Syndrome is also exceedingly rare. According to the National Library of Medicine, as of 2020, less than 100 cases of Acrofacial Dysostosis-Nager Type have appeared in medical literature. Much is still unknown about Nager Syndrome, but studies are actively being conducted.

For Ella, the condition affects her jaw, elbows, wrists and fingers — limiting her movement and use of those body parts.

“Because of the small, retracted jaw, she needs a [tracheotomy] to breathe, and then at the time they also put in a feeding tube because that’s all small there so she can’t really eat or swallow,” Kayla said. “Because of her trach, she can’t speak currently, and so she has to use sign language. With her anomalies in her arms, it can be a little challenging, so we are just trying to find different ways.”

For the Luders, adapting has become paramount.

“We are both working full-time. Because of her condition with her trach, she has to have somebody with her full-time, awake. So we have to have in-home nursing to care for her,” Kayla said. “We have nurses that will come in at night and watch her so that we can sleep. If they weren’t there, we would have to be awake with her.”

Ella also needs nurses Monday through Friday, as she needs a trained individual to provide daycare.

“We are constantly juggling,” Kayla added. “We are at work, then we go to appointments. We are also taking an ASL curriculum.”

However, when the Luders sit down at their Thanksgiving table this week, they won’t focus on any of that. Instead, the couple said, they are grateful for Ella’s resilience.

“She adapts to everything,” Kayla explained. “She still communicates her needs, she still communicates via ASL even though it may look a little bit different. As far as her personality, there are so many words I would use to describe her: feisty. Feisty is what comes to mind even from day one ... She has always had her opinions since day one. It’s her way or else. Lots of attitude and sass.”

In addition to her infectious attitude, the newly walking toddler also has the biggest heart.

“She’s got a favorite nurse,” Matt said. “[Saturday] night, her grandma stayed over late and she’s usually there when this nurse gets there and she was walking around in her room playing and it was full stop, she wheeled her head around saw the nurse and it was all I could do to keep her from zipping down the stairs.”

“She just walks around like she owns the place,” Kayla added. “Like it’s her house and we are just living in it.”

The couple said they have received tremendous support from the community and their own family — from fundraisers to Facebook followers.

“I just get comments all the time too, like ‘Oh my gosh, is she just always happy?’ Yeah, she really is,” she said. “Every person that meets her, they just fall in love.”

They are also grateful to have a team of dedicated nurses.

“Our nurses are huge for us,” Kayla said. “They go above and beyond, out of their way, to make sure that not only is she taken care of when they are on their shift, but making evenings and weekends run smoother for us when we don’t have the nurses there.”

Additionally, in Chase County, the couple is seeing support from other children.

Matt’s mother, a retired preschool teacher in Chase County, was invited to visit the fifth-grade class in reading R. J. Palacio’s “Wonder,” a story about a boy born with Treacher Collins syndrome.

“The fifth-grade teacher had my mom come in and talk about the differences and sign language and just saying ‘Hi’ and since then there has been a lot of kids say ‘Hi’ to her and play with her for a second,” Matt said.

“People are curious, they see her hearing aid or her trach and they are like ‘what is that?’ We would much rather someone come up and say ‘Hi’ and that kind of thing rather than just stare,” Kayla added.

The Luders have also found a community online, with other families with medically complex children.

“Through social media, we have found families from all over the world,” Matt said.

“If you don’t deal with it you just don’t even know,” Kayla said. “I knew it existed, but not to the extent. I follow a lot of these moms on Instagram or social media and that’s another area of support that I have because I can reach out to them, they understand what it’s like to have a kid with medical needs and they offer support that way.

“There is always something to be thankful for,” she continued. “Things could always be worse than they are and I feel like we have adapted pretty well because of all of the support and everything that we have.”

Overall, the Luders said, seeing Ella and Oliver thrive is the reason they stay thankful.

“I know everyone is biased with this, but we could not ask for better kids,” Kayla said. “[Ollie] is such a great big brother to her and includes her in everything, talks about her all the time at school. … He doesn’t know any different. It’s just Ella. It’s his sister and she is who she is.”

“Ollie is one of the biggest reasons she’s doing so well,” Matt added. “She wants to do everything he’s doing.”

“This girl right here, just who she is, is what keeps us going every single day,” Kayla said. “Just how amazing she is doing at adapting to everything; that alone keeps us thankful and thriving.”