We're excited to come together to participate in 2025 Milwaukee Walk N' Roll, a fundraiser supporting National Ataxia Foundation. Every donation—big or small—helps us reach our fundraising goal and directly impacts this important cause.

Let's talk about Eden and what lead us to doing this walk:

Eden entered this world with remarkable speed and intensity, keeping us alert ever since. Since birth, Eden has experienced low muscle tone (hypotonia) and was diagnosed with Developmental Dysplasia of the Hips (DDH) at just 6 weeks old. She has been undergoing physical therapy (PT), occupational therapy (OT), and speech therapy continuously. At 6 months old, Eden began experiencing what we refer to as "episodes" where she would stare blankly and was unresponsive to sound or pain during those moments. Although these episodes lasted only a few seconds, they felt like an eternity to us. We were even taken to the emergency room for head CT scans and EEGs after one such episode during a therapy session. As she developed, we observed an increase in the frequency of these episodes along with additional symptoms. She exhibited instability (like she was drunk), choking incidents, heightened sensory needs, and difficulties with communication. After consulting countless doctors, obtaining second opinions, and undergoing many swallow studies, EEGs and MRIs/CTs, we finally had the opportunity to consult a neurologist specializing in movement disorders. Despite the 5-hour drive (one way!), we were overjoyed to confirm that we were not imagining things; these episodes were indeed a real condition! After examining Eden's medical history and our personal detailed notes of episodes, he diagnosed her with dystonia and episodic ataxia (EA)—conditions our family had never heard of before. The provider took the time to clarify what EA was and how all of Eden's weird symptoms fit the diagnosis and referred us to the National Ataxia Foundation. The only positive aspect of the 5-hour journey home was the opportunity to conduct research from the passenger seat. We became involved in support groups, joined the NAF, and began informing our family and friends about her situation. Although we still face challenges in finding the appropriate medication dosage for her, we have witnessed improvements for which we are immensely thankful. Eden continues to participate in various therapies (including the addition of equine therapy) and sees multiple specialists to address her sensory/obsessive-compulsive disorder (OCD) needs, low muscle tone, and swallowing/speech difficulties. Nevertheless, our Eden is a resilient fighter, and we are committed to advocating for her to ensure she has the best possible life, despite this diagnosis.

Thank you so much for your support! We couldn’t do this without you!

~Eden's Mom, Dad, and Sister (and Eden too!)