By Kris Klenke, board member, MPS II parent
This beautiful quilt represents over 20 years of love and commitment to an organization we believe really helps families through the entire MPS journey. I remember sitting in a tiny exam room and hearing “your son has an MPS disorder.” Although those three letters represent an awful diagnosis, they also represent a family and organization we love!
When Kraig was diagnosed in December of 1994, there was very little research happening for MPS. No treatment options were available, other than transplant, and there was very little hope at that time. However, we found caring and loving people who we now consider family through the National MPS Society.
We could not sit idly by and just watch Kraiggy’s health deteriorate; we had to do something. Through the National MPS Society, we knew that families like ours could find hope and support, so we started fundraising. We knew with funding dollars the Society could grow the family support programs and help our family as well as others. We did a few little projects to raise some money, but finally did our first big event, Bowling-for-a-cure (now named Klenke Bowl), in 1998. We decided on a bowling event because this was an activity that Kraiggy could do and something that he enjoyed.
Over the 20+ years we have been hosting fundraisers we have raised over $100,000 for the National MPS Society. We have connected with MPS doctors and researchers in the St. Louis area who also come and support these events, as well as MPS families in the area.
This is not just a beautiful quilt to keep us warm; this is a treasure full of memories reminding us of everyone that has come together over the years to support Kraig and our family through this MPS journey. They believed in our vision to help and have continued to support our cause. Our Kraiggy lives on through the events we host and this quilt reminds us of his love as he continues to be our inspiration. Kraiggy’s Great Aunt Jane Dapkus created this quilt. She generously donated her time and talent to put this together for us. We are incredibly grateful to her!