Lindsay Roper and her family.
My name is Lindsay Roper, I grew up in northern California and met my husband Alan while we were going to college in Utah. We married and moved to Orem, UT, where we live with our daughters Sadie (2 ½ years) and Lacey (3 months). As a mother of a child with a rare disease, I often feel powerless to help my daughter with some of her life’s challenges. She has an excellent team of caring medical professionals, but I wish there was more I could contribute. Volunteering for the PKD Foundation is something I can do to help.
Lindsay Roper’s daughter, Sadie
My oldest daughter was diagnosed with ARPKD at 2 months old, and this was my first exposure to PKD. We had no family history of kidney disease and I struggled with this difficult introduction to parenthood. Sadie spent a few days in the hospital after her diagnosis to regulate her sodium and blood pressure levels. Sadie visits her nephrologists every few months for blood testing, requires monthly blood pressure checks, and occasional ultrasounds. Her kidney function is stable for now, and although a transplant is in her future, she is a happy and energetic two-year-old. I am grateful to be able to watch my daughter grow and learn. Sadie enjoys playing with dolls and dress ups, reading with Mom and Dad, coloring, teaching her baby sister to play, and snuggling.
In October 2017, one year after Sadie’s diagnosis, our family attended our first Walk for PKD in Salt Lake City. I loved the sense of community the event created, and I was so grateful to have the opportunity to meet more parents who understood the worries I had about my daughter’s health. I offered to help and accepted the volunteer Walk Coordinator position for the 2018 fall Walk. Organizing a fundraising event for 150 people was a new challenge for me, but I had so much support from the PKD Foundation and a few fabulous, experienced local volunteers. It was so fulfilling to see family members and loved ones of those with PKD come together to support the search for a cure. I loved seeing others have the same supportive experience I felt from this community.
I volunteer for the PKD Foundation to help create a community of families helping families. I have found so much support from other parents who have children with ARPKD.
Local PKD Chapter events give people and families the chance to find that support. The Walk for PKD also creates opportunities for fundraising. Fundraising helps fund research to find a cure, which I hope will be available during Sadie’s lifetime. There are volunteering opportunities for everyone, no matter how much time you have to give. You can help pass out t-shirts at an event, fill balloons, draft emails, hang fliers, plan local activities, or head registration for your local Walk. If your area does not have a local PKD Chapter, contact staff at the PKD Foundation and get one started! Your volunteering contribution– big or small– makes a difference.
Are you interested in volunteering like Lindsay? Get started by becoming a volunteer with the PKD Foundation today!
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I’m grateful to Lindsay and all who volunteer and help those affected by PKD/ARPKD. Our first grandson Bennett was born with ARPKD 2 years ago January. No one in our family had ever heard of the disease. It’s been helpful having others for guidance and support!