As a 26-year-old young woman, I often find myself asking, “What is my purpose on this earth?” After much soul searching and asking God for direction and clarification, I know for sure that this is one of my purposes — to share my story.

At the age of 10 approaching my 11th birthday, my life changed drastically. I remember feeling horrible, confused, and afraid of the unknown. As a child, I hardly ever got sick, so being admitted into a children’s hospital was very foreign to me. I remember sitting in the hospital bed thinking, “What is happening?” That simple question in my head, led to a ton of answers I couldn’t even begin to understand.

After running several tests, my doctors determined I was experiencing nephrotic syndrome. A biopsy was performed to determine the cause of the nephrotic syndrome, and I learned that I have a rare kidney disease called minimal change disease (MCD).

As my teenage years approached, the road didn’t get any easier.

During my 10th grade year of high school, I was experiencing the worst pain in my entire life. The pain was located in the upper left portion of my back. It even hurt to breathe. I knew something wasn’t right and I knew that I needed medical attention. My parents took me to the children’s hospital and there we found out that I had a pulmonary embolism (blood clot) in my left lung due to my rare kidney disease. Because of this I ended up on a ventilator, fighting for my life. After coming off the ventilator I realized that even though my health situation was tough, I was determined to help others living through the same struggles.

Living with RKD has been a challenging journey, and it still is after 16 years. During 2020, I caught COVID-19. This was so tough because once again, I almost died. I was laying down in bed one morning feeling weak and tired. I was not worried about feeling terrible because I thought that was a side effect from having COVID. Little did I know, it wasn’t just COVID that was making me feel so weak. As I was laying there, I noticed that I was bleeding from my chest. I called for my mother’s help and she called 911. The next thing I knew, I was waking up in a hospital bed. The doctor came in to inform me that I needed to have several blood transfusions because I had lost literally half the blood in my body. Coming out on the other side of that situation, I knew just as clear as day that I had to continue sharing my story. I have cried endless nights asking, “Why me?” Until I realized, “Why not me?” I’ve learned that the hardest things we go through are typically where our purpose lives. The impact of RKD is more than a physical attack but a mental one as well.

There are many days where I feel down, hopeless, burdensome, and lonely due to others not understanding the trajectory of this disease. Every day is a battle and while it’s been so easy to give up, I decided to find the beauty in my story. I am a firm believer that nothing we go through is by mistake but is part of our life’s purpose.

The beauty that I discovered in having a rare kidney disease is simply that — it’s RARE! Meaning, that I have a unique story like no other. A story that can help others who are dealing with something rare as well.

As I reflect back, if there’s anything I would tell my younger self, it is: “You’re going to encounter a lot. This will be a long tough journey and sometimes you’ll want to give up, but going through this will build a great strength within you. While this is tough, I want you to know that you will have the opportunity to share your story with others and be an inspiration to many.”

The experiences I’ve shared are just a glimpse of everything that I’ve gone through in my life. My hope is that whoever may be reading these words, wherever they are, will find some level of encouragement. Sharing my story with others has been such a blessing to me. I’ve always said as a little girl that I would be an author and now, I have the perfect story to share.

With much prayer and confidence, I have decided to turn my life story into a book which you will hopefully get a chance to read soon. My goal is to help encourage and inspire others to keep fighting despite what things may look like right now. While we all have something ugly that we go through, we must find the beauty in it and allow it to shape us into the person we are destined to be in life.

What’s the beauty in your story?

Keyaira S.

"What’s the Beauty in Your Story?"

Keyaira S. lives with MCD.