Jarl & Mary Family Medical Fund
Donation protected
Family, friends and community supporting Jarl & Mary Kubat for medical traveling expenses associated with finding a cure for their daughter Sadie. Read their story below:
Sadie was 21 years old when her world, our world, changed forever. It was Nov. 28, 2012 when Sadie suffered her first (of hundreds to come) grand-mal seizure. That day we discovered Sadie had a rare brain birth defect - Bilateral Periventricalur Gray Matter Heterotopia (BPVNH) a “rare disorder of the world”. The effects of the illness and diagnoses took away, from our daughter, so many things dear to her heart. She had to quit a job she loved, which means lost medical insurance. She lost her driver’s license, sold her truck and her beloved horse. And, unfortunately, the loss of health and functional ability was hard on friendships which only added to her loss and isolation.
BPVNH occurs during pregnancy, while the baby’s brain is developing. BPVNH typically lays dormant until the second decade of life and then starts causing problems in the form of seizures, memory problems, and a host of other issues. With BPVNH, not all of the gray matter in the brain migrates to the correct location and instead settles near the center of the brain, in place of white matter. This poor migration affects communication of neurons involved in muscle control and sensory perception such as seeing and hearing, memory, emotions, speech, decision making, and self-control.
Jarl, Mary and family have made many changes to their lifestyle to be with Sadie and support her through numerous hospitalizations and treatments for this rare disease. Her mother, Mary, quit nursing school and her job of 7 years to be Sadie’s main support. Jarl and Mary both have traveled numerous times across the States to be at Sadie’s side. As Sadie’s ability to make decisions decreases, it becomes increasingly important for family to be with her to make certain she is safe and getting the best medical attention possible.
NEW HOPE: Mayo clinic in Rochester, MN recently referred Sadie to the Epilepsy Clinic in Cleveland, Ohio, the top epilepsy clinic in the U.S. In June of 2015, the Cleveland Neuro Team will perform extensive neurological testing of Sadie’s brain, such as: PET scans, Video EEG, MEG, blood tests and SEEG. The SEEG is very invasive and consists of shaving her head and drilling approximately 20 holes in her skull to place electrodes deep in the brain tissues, searching for the main source of seizure activity. All of this is necessary to develop a future plan for controlling her daily seizure activity. Current considerations include brain laser surgery, lobe resection, or placement of a Neuropace (a device placed in the brain that sends electrodes to diffuse seizures).
This plan for investigation and treatment requires Sadie, Mary and other supporting family members to spend the next 1-2 months in Cleveland, Ohio. Hotel stays, living and travel expenses are anticipated to exceed $10,000.00 for Jarl and Mary, in addition to taking Jarl away from his job, as sole supporter of the family, for extended periods of time.
HOW YOU CAN HELP: Please consider making a contribution to Jarl & Mary to allow them to travel with and support Sadie in this next journey of her search for a cure. As any parent knows, we support our children in any way we can. In the case of Sadie, Jarl & Mary’s ability to travel with her and support her in this treatment may mean the difference between life and death for Sadie. It holds one of their last hopes for improved quality of life for Sadie and for their entire family. Please help
Sadie was 21 years old when her world, our world, changed forever. It was Nov. 28, 2012 when Sadie suffered her first (of hundreds to come) grand-mal seizure. That day we discovered Sadie had a rare brain birth defect - Bilateral Periventricalur Gray Matter Heterotopia (BPVNH) a “rare disorder of the world”. The effects of the illness and diagnoses took away, from our daughter, so many things dear to her heart. She had to quit a job she loved, which means lost medical insurance. She lost her driver’s license, sold her truck and her beloved horse. And, unfortunately, the loss of health and functional ability was hard on friendships which only added to her loss and isolation.
BPVNH occurs during pregnancy, while the baby’s brain is developing. BPVNH typically lays dormant until the second decade of life and then starts causing problems in the form of seizures, memory problems, and a host of other issues. With BPVNH, not all of the gray matter in the brain migrates to the correct location and instead settles near the center of the brain, in place of white matter. This poor migration affects communication of neurons involved in muscle control and sensory perception such as seeing and hearing, memory, emotions, speech, decision making, and self-control.
Jarl, Mary and family have made many changes to their lifestyle to be with Sadie and support her through numerous hospitalizations and treatments for this rare disease. Her mother, Mary, quit nursing school and her job of 7 years to be Sadie’s main support. Jarl and Mary both have traveled numerous times across the States to be at Sadie’s side. As Sadie’s ability to make decisions decreases, it becomes increasingly important for family to be with her to make certain she is safe and getting the best medical attention possible.
NEW HOPE: Mayo clinic in Rochester, MN recently referred Sadie to the Epilepsy Clinic in Cleveland, Ohio, the top epilepsy clinic in the U.S. In June of 2015, the Cleveland Neuro Team will perform extensive neurological testing of Sadie’s brain, such as: PET scans, Video EEG, MEG, blood tests and SEEG. The SEEG is very invasive and consists of shaving her head and drilling approximately 20 holes in her skull to place electrodes deep in the brain tissues, searching for the main source of seizure activity. All of this is necessary to develop a future plan for controlling her daily seizure activity. Current considerations include brain laser surgery, lobe resection, or placement of a Neuropace (a device placed in the brain that sends electrodes to diffuse seizures).
This plan for investigation and treatment requires Sadie, Mary and other supporting family members to spend the next 1-2 months in Cleveland, Ohio. Hotel stays, living and travel expenses are anticipated to exceed $10,000.00 for Jarl and Mary, in addition to taking Jarl away from his job, as sole supporter of the family, for extended periods of time.
HOW YOU CAN HELP: Please consider making a contribution to Jarl & Mary to allow them to travel with and support Sadie in this next journey of her search for a cure. As any parent knows, we support our children in any way we can. In the case of Sadie, Jarl & Mary’s ability to travel with her and support her in this treatment may mean the difference between life and death for Sadie. It holds one of their last hopes for improved quality of life for Sadie and for their entire family. Please help
Organizer and beneficiary
Rhonda Prestegard
Organizer
Rochester, MN
Jarl Kubat
Beneficiary
