I am reaching out for my dear friend Jo and her husband Mike who have faced adversity beyond what most parents should ever have to comprehend. They unexpectedly lost their 3 year old son Max six years ago due to a malrotation in his small intestines and have recently received devastating news that their second oldest son Charleston has juvenile Batten disease. Batten disease is a rare and fatal genetic disorder that affects otherwise healthy children. The symptoms include blindness, seizures, cognitive decline and mobility issues. Currently the disease is terminal by the late teens/early 20s because there is no treatment or cure. Charles began having vision problems in preschool and was fitted with glasses. Unfortunately his vision continued to worsen, leading to a series of extensive tests leading to a genetic test confirming Batten disease in April of 2017. Charles is 8 years old today and a loving older brother to Gus, Leu, and Henry. He remembers his older brother Max and the Klein family has kept Max’s memory alive with the passing years and with each happy new addition to the family. Charles’ vision is now severely impaired and he is already requiring additional devices to assist with his daily tasks and school work. He continues to remain happy and active with his loving family and they are doing everything they can to support him. They have started a fundraiser for Batten Disease Foundation at www.bindupbatten.org
in hopes to aid in funding to the organization to get him in a clinical trial for a drug that could potentially delay the effects of the disease. Charles’ younger brothers are at risk for having Batten Disease but at this time Mike and Jo have chosen not to get them tested. I want this fundraiser to be specifically to help the Klein family as they continue to choose to live in the “now” and enjoy every moment they have together. They made it through the devastating loss of Max and know how precious the gift of time is with their children and with our continued support I hope that financial needs can be the least of their concerns as Charles’ needs continue to change. Jo was 8 months pregnant with Gus when Max passed away, and received the devastating news about Charles around the time that their youngest son Henry was born. They are a happy and loving family despite these trials and continue to share love to their family and friends. Jo and Mike have asked that people are aware that funds will be used to help pay for assistive technology, supplements for deficiencies found in Charles' bloodwork, acupuncture and other immediate family needs. I am inspired by their strength and hope that as a community we can support this wonderful family as they continue down this journey.