Hello, my name is Riley Crowder. I am a 26-year-old woman with my master’s degree in Child Life. For those who don’t know: Child Life Specialists normalize the hospital environment for children and their families by explaining new diagnoses, preparing for procedures and tests in developmentally appropriate ways, and using play to distract from painful and potentially trauma-invoking experiences. I love hiking, kayaking, going to the gym, and being around my friends and family. My friends and family would describe me as kind, empathetic, funny, outgoing, and motivated.
The second part of my life story is a bit "different" than that of the average girl. At the age of 4, I was diagnosed with End Stage Renal Disease. At this time, I began taking loads of medication. Each medical complication throughout my childhood caused me to become more anxious and scared. I never felt in control of my life.
When children go through medical interventions that are not properly explained, they tend to internalize their pain and suffering. Young children who have multiple traumatic medical interventions can start to believe that they did something to cause the pain. That was me.
Growing up with Chronic Kidney Disease and Chronic Kidney Failure was not easy on my family or me. I hated having to miss out on school dances, soccer games, fun. I felt alone - like I was the only one struggling with this disease. My life of ambulance rides and hospital stays were a source of trauma and stress. My transplant coordinator suggested a visit to a camp in Maine for kids with life threatening illnesses and their families.
Camp Sunshine is a place where children can be children, while still receiving the medical attention they need. After my transplant, my family and I attended the week for kidney transplant recipients. The special impact Camp Sunshine had was that it made me feel like I wasn't alone; there were others struggling with the same things and sometimes their situation was far worse than mine. This helped me put my illness into perspective. My mom's questions involved how to be there for her chronically ill child, and be present for her healthy children. She learned that balance is key in a hectic predicament, and that children with a life threatening illness have to be raised to LIVE.
In March 2002, I received a kidney from my mom. I could finally live a life uninterrupted by hospitalizations and needles. I could play soccer without feeling like I was going to pass out, dance, and most importantly, I was able to go to school, hang out with my friends.
My mom says donating her kidney is the best decision she’s made in her entire life. I quote her saying, "If I could grow kidneys and give them away, I would go through that surgery time and time again.” Today, my mom is a healthy woman, she is a Nurse Practitioner, she hikes, travels, and appreciates the little things in life. My mother is my hero; she was able to give me life not once, but two times.
I took advantage of this healthy time; I graduated from high school, college, and graduate school. I traveled the country and parts of Europe. I even hiked the Grand Canyon! I feel I truly lived! I graduated 2014 with my Master’s degree and I landed my dream job as a Child Life Specialist at Miami Children's Hospital. I wanted to give back - give children a sense of normalcy during an incredibly traumatic time in their lives. Camp Sunshine and my other experiences were able to give me that sense of "normalcy" in a time that just seemed chaotic. Getting into the Child Life field allowed me to ensure others felt some sense of routine in an overwhelming environment
A year ago, my transplanted kidney failed and I started dialysis. On that day, I had to come to terms with the fact that I could no longer work in my field due to immunosuppression and the “physical drain” of dialysis.
I am not sharing my story in hopes to get a pity party. I am sharing my story because I, among hundreds of thousands others, need a new kidney. But honestly, what makes me deserve one more than the 26 year old physical therapist that has been waiting 6 years already for a second transplant? Or the 25 year old esthetician on her second transplant, which is functioning at 30%? Nothing. But there is a program at Massachusetts General Hospital called the Exchange Program. The Exchange program is also known as paired donation; Recipient A who needs a kidney secures a willing donor (Donor A) that does not match directly to him/her. Then Recipient B, comes with another willing donor (Donor B) who also does not match directly to Recipient B, but does match to Recipient A. Therefore, Recipient A receives a kidney from donor B, and Recipient B receives a kidney from donor A.
Through a GoFundMe account I had started 2 weeks ago, people raised a total of $13,749. With those funds I was able to purchase 2 billboards in well-traveled parts of the Manchester, NH area. One billboard is digital and will be displayed for 1 month and the other is vinyl and will be displayed for 2 months starting on July 1st. The billboards will hopefully be seen by that one special person that can start a chain reaction that saves multiple lives.
There are still ways to help: share this story, and spread the word about childhood kidney disease, kidney failure, and kidney transplant through paired donation! More direct ways to help would be to explore paired donation, live single donation, and donating your organs after death. I know it seems scary and daunting, but it could save lives. Although it may seem like a monumental gift, donors should know that many resources are available throughout the donation process. All medical costs are covered by the recipient's insurance, and there will be many people available to help you in any way you need.
You could personally help me through considering donation by calling Massachusetts General Hospital's Transplant Program at 617-643-7193, or sharing this website and my Facebook Group "Let's Find A Match." Please think about how amazing it would be to save someone else's life. Thank You!
The second part of my life story is a bit "different" than that of the average girl. At the age of 4, I was diagnosed with End Stage Renal Disease. At this time, I began taking loads of medication. Each medical complication throughout my childhood caused me to become more anxious and scared. I never felt in control of my life.
When children go through medical interventions that are not properly explained, they tend to internalize their pain and suffering. Young children who have multiple traumatic medical interventions can start to believe that they did something to cause the pain. That was me.
Growing up with Chronic Kidney Disease and Chronic Kidney Failure was not easy on my family or me. I hated having to miss out on school dances, soccer games, fun. I felt alone - like I was the only one struggling with this disease. My life of ambulance rides and hospital stays were a source of trauma and stress. My transplant coordinator suggested a visit to a camp in Maine for kids with life threatening illnesses and their families.
Camp Sunshine is a place where children can be children, while still receiving the medical attention they need. After my transplant, my family and I attended the week for kidney transplant recipients. The special impact Camp Sunshine had was that it made me feel like I wasn't alone; there were others struggling with the same things and sometimes their situation was far worse than mine. This helped me put my illness into perspective. My mom's questions involved how to be there for her chronically ill child, and be present for her healthy children. She learned that balance is key in a hectic predicament, and that children with a life threatening illness have to be raised to LIVE.
In March 2002, I received a kidney from my mom. I could finally live a life uninterrupted by hospitalizations and needles. I could play soccer without feeling like I was going to pass out, dance, and most importantly, I was able to go to school, hang out with my friends.
My mom says donating her kidney is the best decision she’s made in her entire life. I quote her saying, "If I could grow kidneys and give them away, I would go through that surgery time and time again.” Today, my mom is a healthy woman, she is a Nurse Practitioner, she hikes, travels, and appreciates the little things in life. My mother is my hero; she was able to give me life not once, but two times.
I took advantage of this healthy time; I graduated from high school, college, and graduate school. I traveled the country and parts of Europe. I even hiked the Grand Canyon! I feel I truly lived! I graduated 2014 with my Master’s degree and I landed my dream job as a Child Life Specialist at Miami Children's Hospital. I wanted to give back - give children a sense of normalcy during an incredibly traumatic time in their lives. Camp Sunshine and my other experiences were able to give me that sense of "normalcy" in a time that just seemed chaotic. Getting into the Child Life field allowed me to ensure others felt some sense of routine in an overwhelming environment
A year ago, my transplanted kidney failed and I started dialysis. On that day, I had to come to terms with the fact that I could no longer work in my field due to immunosuppression and the “physical drain” of dialysis.
I am not sharing my story in hopes to get a pity party. I am sharing my story because I, among hundreds of thousands others, need a new kidney. But honestly, what makes me deserve one more than the 26 year old physical therapist that has been waiting 6 years already for a second transplant? Or the 25 year old esthetician on her second transplant, which is functioning at 30%? Nothing. But there is a program at Massachusetts General Hospital called the Exchange Program. The Exchange program is also known as paired donation; Recipient A who needs a kidney secures a willing donor (Donor A) that does not match directly to him/her. Then Recipient B, comes with another willing donor (Donor B) who also does not match directly to Recipient B, but does match to Recipient A. Therefore, Recipient A receives a kidney from donor B, and Recipient B receives a kidney from donor A.
Through a GoFundMe account I had started 2 weeks ago, people raised a total of $13,749. With those funds I was able to purchase 2 billboards in well-traveled parts of the Manchester, NH area. One billboard is digital and will be displayed for 1 month and the other is vinyl and will be displayed for 2 months starting on July 1st. The billboards will hopefully be seen by that one special person that can start a chain reaction that saves multiple lives.
There are still ways to help: share this story, and spread the word about childhood kidney disease, kidney failure, and kidney transplant through paired donation! More direct ways to help would be to explore paired donation, live single donation, and donating your organs after death. I know it seems scary and daunting, but it could save lives. Although it may seem like a monumental gift, donors should know that many resources are available throughout the donation process. All medical costs are covered by the recipient's insurance, and there will be many people available to help you in any way you need.
You could personally help me through considering donation by calling Massachusetts General Hospital's Transplant Program at 617-643-7193, or sharing this website and my Facebook Group "Let's Find A Match." Please think about how amazing it would be to save someone else's life. Thank You!