"Rare Disease Day: A Day in Remembrance"
By Chelsey Klenke, Vice President, MPS II Sibling
Rare Disease Day is an important day to my family and me. It’s a day to remember my brother Kraig, while also raising awareness in order to improve resources available to those who face different rare disease today. As I sit here thinking about what my family and I will be doing for Rare Disease Day, I am reflecting on what it meant to grow up with a brother who had a rare disease. It meant being exposed to things that most people my age had no idea about. I could spout off certain facts about MPS II Hunter syndrome, the rare disease my brother had. Telling my friends and classmates about family trips most of the time involved telling them about an MPS family conference we attended. Our family’s monthly calendar was typically filled with doctor appointments instead of basketball games, drama clubs or, birthday parties. Although these all may sound like ‘bad’ things, most of the time good came out of it.
I was exposed to many different things that my peers were not, but that meant being able to educate them. There were many opportunities while I was in school to raise awareness for MPS. I was able to raise money for the MPS Society and bring attention to MPS. I held hat days in honor of MPS, brought in cupcakes and flyers on awareness days, and spoke in front of my classmates. When I attended college, some of my research papers were based on MPS bringing awareness to my professors.
Attending MPS Family conferences meant meeting people who were going through the same thing as my family. We have made a lot of lifelong friends through the MPS Society or, our MPS Family, as we like to call them. We know people from all over the world. My family has had the opportunity to meet some incredible doctors and learn from them.
Even though our family calendar was filled with lots of doctor and therapy appointments, we still made the effort to spend time as a family. I realized the importance of spending time with loved ones at a young age, and to not take that for granted. My family and I have a lot of good memories surrounding my brother, because we took the time to create those memories with him. My brother is my hero and he always will be. He taught so many people the importance of enjoying life throughout his 18 years with us. He has inspired me to always pursue my dreams and work hard at whatever I do.
By Chelsey Klenke, Vice President, MPS II Sibling
Rare Disease Day is an important day to my family and me. It’s a day to remember my brother Kraig, while also raising awareness in order to improve resources available to those who face different rare disease today. As I sit here thinking about what my family and I will be doing for Rare Disease Day, I am reflecting on what it meant to grow up with a brother who had a rare disease. It meant being exposed to things that most people my age had no idea about. I could spout off certain facts about MPS II Hunter syndrome, the rare disease my brother had. Telling my friends and classmates about family trips most of the time involved telling them about an MPS family conference we attended. Our family’s monthly calendar was typically filled with doctor appointments instead of basketball games, drama clubs or, birthday parties. Although these all may sound like ‘bad’ things, most of the time good came out of it.
I was exposed to many different things that my peers were not, but that meant being able to educate them. There were many opportunities while I was in school to raise awareness for MPS. I was able to raise money for the MPS Society and bring attention to MPS. I held hat days in honor of MPS, brought in cupcakes and flyers on awareness days, and spoke in front of my classmates. When I attended college, some of my research papers were based on MPS bringing awareness to my professors.
Attending MPS Family conferences meant meeting people who were going through the same thing as my family. We have made a lot of lifelong friends through the MPS Society or, our MPS Family, as we like to call them. We know people from all over the world. My family has had the opportunity to meet some incredible doctors and learn from them.
Even though our family calendar was filled with lots of doctor and therapy appointments, we still made the effort to spend time as a family. I realized the importance of spending time with loved ones at a young age, and to not take that for granted. My family and I have a lot of good memories surrounding my brother, because we took the time to create those memories with him. My brother is my hero and he always will be. He taught so many people the importance of enjoying life throughout his 18 years with us. He has inspired me to always pursue my dreams and work hard at whatever I do.
Rare Disease Day is on February 29
This story was written in memory of Kraig Anthony Klenke,1991-2010
MPS II, Hunter syndrome
Visit: www.mpssociety.org for more information
This story was written in memory of Kraig Anthony Klenke,1991-2010
MPS II, Hunter syndrome
Visit: www.mpssociety.org for more information
Siblings with a Mission is an international organization established to serve and support siblings of individuals with special needs. All images are found on Google images and are solely used for education purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.
