Running for Theo

*I'm overwhelmed by the generosity! I'm raising the bar as we surpassed my initial fundraising target in the first day! Thank you all for your support, it means a lot.

In October I am running the Twin Cities 10-Mile. Please join me in supporting the kids & families served by Crescent Cove. It is the first and only Respite & Hospice Home for Kids in the Midwest. Your donation provides respite care for families raising a children with a shortened life expectancy, and sacred end-of-life care for children, all at no cost, in a joyful and vibrant home away from home where moments are embraced and celebrate.

Theodore Lucas Gruber was born in July of 2023 with a severe form of Epidermolysis Bullosa or EB, which is an impossible rare genetic disorder that causes skin to blister and tear with the slightest friction. When he was born, he looked like a normal beautiful healthy boy except for a patch of missing skin on his wrist, but as his life progressed he developed blisters all over his body and in his last few days, he essentially didn’t have skin from the chest down and began to internally blister as well.

As Theo declined and we began to realize what was happening we took a tour to learn about both their respite and end of life services, but things progressed so quickly that four days later we came to Crescent Cove to spend Theo’s final days.

When Theo was born we were immediately thrust into the role of caregivers, because EB requires hours of bandage changes, bathing, ointment application, and pain medications every day. Going to Crescent Cove allowed us to be Theo’s parents for the first time, and we were able to focus on making family memories.

Theo enjoyed his first boat ride with his sister, he slid down the slide at the playground, and we watched the sunset over the lake every evening. The nurses, staff, and volunteers cared for us in such a loving, patient way. We read him countless books, talked to him endlessly, cried frequently, even sometimes laughed, sharing the joy of his life with our friends, family, and his care team. Everyone at Crescent Cove brought such comfort to us and to Theo, and we were free to give him all our love until he took his last breath peacefully in mom's arms while she sang Beautiful Savior.

There is no way that what we experienced at Crescent Cove could ever be replicated in a hospital, at home, or anywhere else. There is such love, purpose, and skill within everyone at Crescent Cove. We wish that no parent ever has to go through the pain of losing their child but we are forever grateful for the memories, comfort, and peace they brought to us and to Theo during what is undoubtedly the most difficult period of our lives.

Please consider join me in making a donation to support this incredible organization, and all of the sons and daughters whose lives and memories will be forever brighter because of you.