Our board vice president, Nicole Bjerke, is proud to serve our community as it helped her as she grieved the loss of her cherished daughter, Rilee Bjerke. In honor of Rilee, Nicole shared a letter written by Rilee to the Make-A-Wish Foundation when she wished for a dog a year before she passed away. All TBD patients under 18 are eligible to participate in the Make-A-Wish program, and Team Telomere can provide a letter of support if needed.
My name is Rilee Bjerke, I’m 17 and I have a disease called Dyskeratosis Congenita. Having DC puts a lot of restrictions on what I can and can’t do. I have many problems with the disease one being my lung fibrosis and another being my level of energy and my school is pretty big so we have changed my schedule many different times to make it easier on me. With this disease, there are no quick fixes or simple answers/ solutions. My schooling has changed so much to help and allow us to focus on my health. And limit the stress that comes with school. We have changed the classes so I am able to get the amount of sleep I need with half a day of school. We have also changed it to one class in school and the others on a computer the school has given me.
Now my schooling is all home-bound which has made it a lot easier for me. I learn differently than the kids at my school so having the way I learn to be catered towards me makes it so much easier and allows me to work at my own pace. Having it one on one is nice because the teacher doesn’t have to worry about multiple students and it’s easier to ask questions. They only need to focus on you and make sure you understand. I also don’t have to worry about asking a dumb question or getting something wrong in front of a class full of kids my age. My assignments are doing math lessons on the computer, always having a book to read, and doing Spanish in an app my teacher can look at. This is constantly changing based on how I feel or if I’m in the hospital. Once a week the same teacher comes to my house and checks my work, sees how I’m doing, and makes sure I am also focusing on taking care of myself and if I need rest to make sure I’m resting. She will ask if I feel overwhelmed with work and if I am to change what I’m doing or add more work. My grading is different and I’m put on a pass/fail system with the school. An example of a week for me looks like this: Monday, I read and rest. Tuesday, the teacher comes over, if I haven’t slept in or rescheduled to a different day, and we do math sheets, quizzes, talk about my health. Wednesday, I do math lessons on my computer. Thursday I work on something that I haven’t done a lot of that week and my mom also works at night on Thursdays and Fridays so my dad, sometimes my sister, and I go somewhere to eat or invite my grandpa over. Fridays are usually the days I have all-day clinic appointments. The week changes if I’m in the hospital or have something going on. The school understands when I’m in the hospital but if I feel up to it I can bring the computer or a book to work on.
The reason(s) why I picked a French bulldog is the small size they are, so I can handle the weight and power of it. I get out of breath and tired very fast so I can only walk for a little at a time and French bulldogs don’t require a lot of exercise due to their short noses. They like a lot of attention and don’t like to be alone which is perfect for me. Shedding isn’t a problem for me and doesn’t need a ton of grooming. They are known to be lap dogs and I would appreciate the company. A dog would be a great part of helping me with my view and attitude towards things. Most of the day I am sitting or laying down. I think a dog would help/ encourage me to get outside and move around more to let it out. Having to left it out would help me improve my lungs. When I feel down or lonely it would be there to comfort me and make me smile. The responsibility of bathing, feeding, training, playing, grooming, etc would keep my mind focused on something happy instead of the problems this disease brings and always having to be in the clinic/ hospital. It is nice to hold and care for and buy supplies for. When I have a bad day it would be nice to pet and be something that can make me happy and look forward to holding and caring for.
A dog would help teach me things and which way is best for it to learn and I can also teach it basic tricks like sit and give a name to. When I’m home alone I would have it to cuddle and make me feel a bit more secure. Playing with and petting the dog could help me to calm down and relax. The touch and warmth of a dog could ease my mind to know it’s by my side and go through the day easier when I’m feeling crummy. With the dog, there would be a routine that would help me get out of bed and get active. I think having a dog would bring more smiles and laughter and less stress and worry. I focus and take care of myself which I don’t think is bad but caring for a dog would distract me from thinking negative thoughts about my problems and what we can’t fix and teach me what the dog likes and about him/ her overall. Instead of thinking of the positive things, I go to the negatives of why did I have to have this disease or it’d be so much better if I could do what everyone else can, which is a very bad habit but it is hard to be happy all the time when you get thrown a bucket of bad news and no fixes each week. I’m at home all week or almost all week so it wouldn’t be left alone a ton. I would love to have a dog because it’s like a getting friend that wouldn’t judge me or suggest things for me to do that I can’t because of this disease. Most people don’t know what to say, don’t know what to do, and/or don’t understand what I can and can’t do which leads to awkward questions or comments which irritate me but I know no one really know much about this disease because very few people have it and everyone with it is at a different stage of it. When we went to camp sunshine I learned that most kids there don’t have it as bad as me or got it later in life or are just beginning. I’m not saying this disease is worse than cancer and I’m also not saying it’s better but a lot more people understand what a person goes through when they get cancer from the news, tv shows, or someone actually in their life.
This disease is so rare and almost everyone doesn’t know how bad it is or what the disease is. With cancer, I think people have more of a protocol because of the number of people with it and people usually know what to do, how to deal with it, and what to say. There are types of cancers but each one has somewhat of a guide to knowing the first steps. I do wish with this DC, everyone had more of a structure/ protocol but very few have it and a lot of people have a different problem with DC and a lot of people get multiple problems. Dogs just seem happy all the time and having that around me would be great for my mood which would help my family a lot. When I’m home or waiting in the hospital or clinic I think a lot and probably overthink things and just knowing the dog’s always there would reassure me. Especially when I don’t feel well I’m not the happiest so when I’m exhausted, in pain, irritated, worried, anxious.. etc a dog could relax me and just be around to comfort me. I think it would eventually recognize if I’m sad or in pain and help me with what I’m going through.
It’s hard on me and my family with this disease and learning how to adjust to it. When I don’t feel well or am in the hospital with usually my mom we are stuck there and don’t get a good night’s sleep and usually don’t get any answers to the source of the problem I’m dealing with that stay. I feel like we just get more or different problems that no one can figure out. And if we do find something that works, it usually only works for x amount of days or it works but creates a new/ different problem like continuous stomach cramps. I would love to get a dog so I have something to do every single day and give me responsibility and to occupy myself. I keep my room clean and make sure everyone keeps things sanitary so I don’t get sick or a virus and I think it’d be a good thing to have the dog and make sure to keep it clean and groomed and get into a routine. I like having a routine to go by and remember things. Dogs are incredibly smart and can sense things like your mood or can tell if something’s wrong. Which would help me a lot. I would love a dog. They just seem very happy and don’t think worry about what has happened or what will happen in a week they just think about what is happening right then and are happy to see you and follow you around and I would like to think only about what is happening and be happy all the time. I would love it to just be around me and to pet it. They make you smile and laugh and I would love to smile more. I think a dog would definitely improve my life and my health.