This fundraiser is the first, of hopefully many, to raise awareness of Menkes Disease and support A Rosie Place for Children in South Bend. Nolan Zent was diagnosed with Menkes disease the day before he turned 7 months old. The disease renders Nolan medically fragile, and he fights the devastating symptoms daily, and usually with a smile on his face! The prognosis is poor, and most children with Menkes don't live past their 3rd birthdays. We strongly believe that raising awareness can fuel the drive to find a cure for Menkes Disease and at least improve screening procedures to identify Menkes Disease at birth so it can be treated immediately. Follow along with Nolan's journey at Nolan's Story.
This year, Nolan's Menkes March will support A Rosie Place. In a safe and nurturing environment, A Rosie Place provides a haven for children who are medically fragile while providing family members' periods of relief from the demands of providing 24 hour care. A Rosie Place has been instrumental in allowing Steve and me to take some time for ourselves and take a breather.
Sheena Zent - Nolan’s mother