Mikki Monroe Ward

We are blessed to be Madelyn's (Maddie) Great Aunt & Uncle! Maddie and her mom, Shannon (our niece), are dearly loved! The past year and a half has been one of many unknowns regarding Maddie's fragile health. At fifteen years old, she has experienced numerous hospitalizations and intrusive testing to finally reach a diagnosis of Neuro-Behçet's Syndrome. Neuro-Behçet's syndrome is a neurological manifestation of Behçet's disease, characterized by a range of symptoms affecting the central nervous system, including headaches, cognitive impairment, and motor dysfunction. It is a rare systemic autoimmune condition that causes inflammation of blood vessels throughout the body. Because Neuro-Behçet's syndrome is a complex condition, it requires a multidisciplinary approach for effective management. Ongoing research is essential to improve understanding, diagnosis, and treatment options for this challenging disease. Maddie and her mom have consulted numerous specialists in the state of Georgia. They have been responsive and helpful. While her present treatment protocol had been managing her recurring symptoms, it is no longer effective and has resulted in a heartbreaking and disabling relapse. She has been unable to regularly attend and participate in scholastic and social functions. In an ongoing effort to obtain appropriate and effective treatment, they will be traveling to New York in December to consult with pediatric rheumatologist (Philip J. Kahn, MD) at Stephen D. Hassenfeld Children's Center for Cancer & Blood Disorders. Ongoing travel and out-of-pocket medical expenses have taken a toll on Shannon’s income and health. It has depleted her financial resources and limited her ability to maintain her work schedule. We started this page to assist Shannon and Maddie with unreimbursed expenses and costs to attempt to ease the financial burden. Our prayers are that Dr. Kahn and his team will be able to provide more in-depth treatment & testing options so that Maddie may be able to live pain-free, return to school, and enjoy ‘normal teen angst’! Understandably, we are all feeling the ‘bite’ of increasing costs, especially during the holidays. Any amount you feel you could donate would be greatly appreciated. If you are unable to donate, we would greatly appreciate your prayers for Maddie, Shannon, & family. Specifically for their safe travel, Maddie’s healing, and physicians’ guidance. Thank you so much for reading our story.