Sam and Lars Jenkins' Story

“Cystinosis has unveiled a whole other world of human struggle, service, and love.”

Not long ago, Sam was sitting in a hospital recliner at Primary Children’s Hospital receiving his ninth infusion for the treatment of membranous nephropathy. I was sitting next to him observing his cute little face. In that moment I felt content with life. As soon as the happy thought crossed my mind though, guilt crept in. My thoughts turned to the question, “How can I feel happiness and peace when my child is sick?” Samuel has days when cystinosis dictates that his body slow down and rest. He also has a lot of tough moments on good days when he needs to slip away to find a toilet to throw up in. Though the disease has not progressed far in Lars, he has a similar routine. However, the vast majority of moments that make up their lives are full of happiness and gratitude. They don’t focus on the pain and injustice in life. Instead they look forward to building their next lego creation together or planning who their next play date will be with. They have taught me that I don’t need to suffer every time something bad happens because there are so many good things in life to be thankful for. Friends and family are among those good things.

Our family has been surrounded by countless friends and family members who have stepped in to support us when cystinosis seems to trigger chaos in our daily lives. We’ve had friends visit us in the hospital, bring us cooked dinners, and provide valuable entertainment to our boys. I’ve even had a friend offer to clean our soiled carpets that Samuel threw up on dozens of times. While it is nice for people to say, “call if you need anything,” we are extremely grateful for people who lovingly and quietly observe our family’s needs and then jump in to help.

When we have one child sick in the ER my sister, Whitney, will quickly call me to say she’ll drive to the hospital to pick up the healthy kid. Behind the scenes, I know she is re-arranging her busy schedule to help without giving any hint as to how she bends over backwards for me. I’m grateful for the complete dependability and generosity that she and many others have shown our family.

While cystinosis has undoubtedly been a huge battle for our family, we are grateful for the growth our experiences have provided us. Cystinosis has unveiled a whole other world of human struggle, service, and love. I have been humbled by the kind letters and inquiries about the boys’ health by people who truly care. While there are hard moments, our community has taught us that there are plenty of things to be grateful for. They have helped us find happiness.

Read More

Subscribe to our monthly newsletter.