With broken hearts, we announce the passing of our sweet, beloved Jack. Jack Rollin Gerber passed away on Jan. 22, 2020, after a lifetime struggle due to an ARX gene mutation that caused severe epilepsy and many other complications. Jack was born on May 20, 2015, to parents Paul and Danielle Gerber of Stoughton, Wisconsin and was later joined by siblings Leo and Nina. Jack was loved so deeply by so many people. He touched lives and made connections with others in ways that amazed his parents time and time again.
He spent his days cuddling with his stuffed monkey, getting snuggles from those he loved, surrounded by the chaos that was his life. He truly enjoyed listening to the chatter of his parents, caregivers, therapists and siblings and was known to laugh at (in)appropriate jokes and when his brother or sister would cry, in typical big brother fashion. Jack made his wishes known in his own way with his happy sounds and little noises, whether it was to call someone back into a room or let you know that he approved of what you were doing. Getting a “Jack smile” or laugh was one of the best feelings in the world, especially the wry smile he would give when his daddy would whistle quietly near his ear or when he would hear one of his favorite squeaky toys. Jack was such a happy, laid-back and gentle soul who rarely complained, even though he would have been more than justified in doing so.
To say that Jack changed our lives would be an understatement. He came into this world in somewhat dramatic fashion and had a quiet six weeks before having his first seizures that turned our world upside down. We had no idea what we were getting ourselves into and how complicated our lives would become with each passing day, month, year. It became clear that Jack would never have a typical life, but as long as he was happy, we promised to support him in whatever way he needed. This meant that Danielle had an abrupt career change and was promoted to CEO of Jack, Inc. Caring for Jack and managing all of his nursing and respite care, therapies, treatments, medications, and appointments with specialists was an all-consuming job. A job that worked her harder than any job she’d held in her life, but she would do it all over again in a heartbeat because helping Jack became her purpose in life.
Supporting Jack at home also meant that we needed a lot of help. We made a lot of friends at both St. Marys and American Family Children’s Hospital. Jack’s grandma Kathryn (Meema) completely altered the course of her life to help with Jack. Nurses who fell in love with Jack at the hospital came into our home to help us care for him and Courtney and Kaitlynn provided respite care around the clock that got us through some of the worst times. These people made such huge impacts on our lives and Jack’s life and we are forever indebted to them.
We are not planning a typical funeral because Jack was anything but typical. Instead, we will have a celebration of his life sometime the weekend after Jack’s 5th birthday.
Ensuring Jack’s life has continued meaning is of utmost importance to us and we begin his legacy with the gift of both organ and tissue donation, including tissue sent to researchers at universities across the country who are studying the ARX gene. Jack’s specific genetic mutation is very rare and there is so little research available, which made treating him extremely complicated.
Additionally, there will be a fund created in Jack’s honor and memory because we feel compelled to give back to those who made such huge impacts on our lives and Jack’s life. It would make Jack happy to be able to help make a positive difference in the course of someone’s life. Initially, this fund would be used to support the education of some of Jack’s caregivers so that they can continue helping other families and also to support the UW Pediatric Complex Care team, which provided invaluable support to us around the clock for the past few years. Our hope is that the fund could grow into something that reaches even further.
We would like to thank Jack for choosing us to be his parents. He taught us so many things in such a short time, without ever actually saying a word. Jack changed us to our very cores and while we will miss him forever and love him always, we know that his energy will carry us forward.
Please share your memories of Jack at: www.CressFuneralService.com.
Donations to the Jack R. Gerber Memorial Fund can be made locally at McFarland State Bank.
Cress Funeral Service
206 W. Prospect Street, Stoughton