Softball: 'Mission for Madden' to star in Rett Syndrome Awareness matchup
Monday marks the opening of the Mid-Suburban League softball season.
But most importantly, Monday's MSL slate will feature the second annual Rett Syndrome Awareness game when Palatine visits Rolling Meadows.
Madden Manz, the youngest son of Meadows assistant coach and former Palatine head coach Jeff Manz, was diagnosed with Rett Syndrome in January of 2016.
Before the last year's inaugural fundraiser, Madden was admitted to intensive care at Lurie's Children's Hospital for a chronic respiratory issue stemming from the condition.
Madden remained in critical condition from mid March until the end of June.
As a result of the life-changing hospital stay, a 'Mission for Madden' was created.
It is about Madden's fight against an extremely rare and life-threatening genetic disorder called Rett syndrome, a neurological disorder that is severely debilitating.
Madden cannot speak, walk, eat or breathe on his own.
In order to give him the best quality of life, he received a tracheotomy tube with ventilator support.
Madden requires 24-hour care.
Currently, there remains no cure for Rett syndrome.
The disorder is most common among girls (1 in every 10,000), and there are under 60 total cases of boys worldwide. Boys are currently excluded from clinical trials, making the mission to find a cure even more difficult.
A 'Mission for Madden' was created with the idea of providing a life for Madden that allowed him to be cared for in his home, with optimal functionality and accessibility with his family and caregivers.
Barrington interior designer Kate Marker envisioned this idea for the Manz family after learning of Madden's battle against this rare disease.
A Mission for Madden took hold of the community.
The Build Team (buildteam.org) based in Barrington and serving northwest Cook and surrounding counties, has joined the mission, along with Patrick Lytle of HammerKraft Homes to assist in creating the optimal home renovations to meet Madden's needs.
The Build Team has contributed more than 70 volunteers and 650 hours of time to Madden's project. The Build Team is a 501-3c charitable organization and accepts volunteers and donations.
The entire Manz family including Maive (7), Max (5) and Madden (2) are looking forward to Monday's fundraiser softball event. Contributions will go to 'A Mission for Madden' along with Rett syndrome awareness and research organizations.