There are several kids that have a terminal or life-threatening illness, but no one knows. While some people are open about there are also some who are afraid to share what they are going through. Destiny Slager is a teenager who was willing to share how her illness has affected her over the years. Destiny is currently going to the Kirkwood Community College in Cedar Rapids. “Right now I am getting my gen eds, but I am technically going for zoo science.” Destiny has been going to the doctor for several years. “I’ve always had problems with my health ever since I was born but when I was around 10 is when it really spiked and I started having a lot of problems.”
Before Destiny was even born her Mother Ronnetta knew she was special. “The doctors told me I would never have a baby, after 10 years I found out that I was pregnant. So when I had her and the doctor handed her to me it was like a feeling I had never felt before and I couldn’t even take my eyes off of her. She was perfect.” While Destiny remembers some of what happened when she was little her mother remembers it all. “Destiny has always had issues with her health with lots of infections and sickness. But things started getting really bad when she was around 8 or 9 she had walking pneumonia 7 times in one year and ended up in the hospital.”
Since Destiny was little she has been going to the hospital a lot over the years, Some are hard to remember, and others are hard to talk about but Destiny was willing to share her story. “So we started going to doctors all the time to try and figure out what was going on(that went on for a few years because they weren’t really for sure).” But the doctors had more, “Then they said that one of the things they thought I had was a connective tissue disease. A few years later I had some genetic tests done and that confirmed that I did indeed have a connective tissue disease called Ehlers danlos syndrome.”
Over the years between childhood dreams, school and visits to the hospital destiny has had to give a lot, but shares one thing in particular. “I know for certain one sacrifice I have had to make to better my health was to quit doing gymnastics as it was just causing me to be sick all the time and in a lot of pain as my body couldn’t handle it anymore.” while this is only one since Destiny has been going through it all, but doesn’t remember all she’s given up. “I’m sure there are other sacrifices too but for the most part, I just try to push through and try not to let anything stop me.” Destiny continues. “Hmmmmm I’m not really sure how many doctor’s appointments I’ve had in the last 6 months but I know I’ve had a lot of surgeries in the last 6 months, I have had 3.” While Destiny is in college, the end of her Senior year was a lot of travels to hospitals and different consultations to find the best plan of attack. Ronneta remembers Destiny’s first surgery as if it had happened only yesterday, but doesn’t get upset instead uses it to help others. “
Her 1st surgery was when she was 3 with tubes in her ears and her adenoids out. And since then she has had 13 different surgeries with each surgery getting more severe.” All of this Has changed the way the whole family interacts. “I have had to miss a lot of work with Destiny’s health issues which makes money very tight, It keeps us way from home a lot which also keeps us away from her brother and I always have had to find places for him to stay at the spur of the moment. I’ve had to go without a lot so Des could have what she needs for her health, but I really wouldn’t call them sacrifices. Because I would give my last breath if that meant Destiny wouldn’t have to be sick anymore.” Ronnetta sees how it has affected Destiny, but also sees how much she has changed from it. “Des is a fighter and although she has her down moments she never gives and she always tries to put a smile on no matter how bad she’s feeling.”
Having Three different surgeries in six months has really changed who Destiny is and who she was. “This really affects a lot of what I do in my everyday life. It can be really hard because when I was younger I used to be able to do anything I wanted without being in pain or having other problems.” Destiny continues, “As I got older it got harder and harder to keep up with my friends and do things I used to be able to do like running and stuff like that.” While Destiny was in school things were different. “During school time I get sick a lot more as lots of sickness goes around the school and my immune system is weak. I also have a lot my pain during school time because of having to sit at the desk all day.” But what about favorite activities? “I may not be able to do some of the hobbies I used to be able to do but for the most part I either push through the pain and challenge so that I am still able to do them or I think of a little bit different ways I can do something so that it doesn’t cause as many problems for me.” Destiny was in Cheer while in high school even though she was seeing doctors all the time. “For example when I was in high school and in cheer I would have to take more frequent breaks than others and I wasn’t allowed to Stretch like the rest of them because it could cause more damage to my connective tissue.”
While Destiny has been sick, she also knows how much it affects the people around her. “This disease doesn’t just affect me though it also affects my family as my mom has to take off work a lot to be able to take me to all my doctor’s appointments or stay with me while I am in the hospital.” Ronnetta worries about the whole family, but she also knows that the whole family will be there to support them. “Destiny’s health is hard for the whole family. Her brother has to be away from us a lot which means he gets passed around a lot just so he doesn’t miss out on his stuff.” Teenage boys may not admit their feelings but sometimes it’s obvious. “And he misses us a lot when we are gone and he definitely worries a lot. And sometimes I feel like I’m failing him because I have to be away from him so much which makes me sad.” No matter what happens Ronnetta keeps her hopes high. “But I try to give him time and do things with him as much as I can. But we are a close family and always try to be there for each other.”
We may not know it, but there are so many kids with terminal or life-threatening illnesses that still go to school. Mr. Reisinger A counselor at the CCA Highschool shares what his role is in helping kids at school. Mr. Reisinger explains what a protocol would look like at school. “I don’t know if we have a specific protocol. Each student is different and we would try to accommodate them in any way possible based on their needs.” With no Actual protocol, it allows all CCA Staff members to help the student with specific needs that no one else has. Mr. Reisinger Shares about how staff members accommodate and assist students. “This would be an individualized plan based on the wants and needs of the student and family.” Some families will have a schedule that works best for their kids. Or certain boundaries that will best help their child. The School does everything that it can to help these kids out, without making them uncomfortable or lonely. In the time That Mr. Reisinger has been an educator, he has not had a student who requires his assistance.
