Early Symptoms and Parental Dismissal

• 💡 Fiona Cauley was born with Friedreich's ataxia but didn't experience symptoms until around age 15, initially dismissed as drinking or drug use.
• ⚠️ Teachers and even her mother attributed her coordination and speech issues to behavioral problems, leading to a three-year delay in diagnosis.
• 🎭 She recounts practicing walking and talking in her room, believing she was having a mental breakdown due to the lack of validation.

The Diagnosis Journey

• 🚗 By age 18, Fiona took her health into her own hands, seeking medical help and eventually undergoing genetic testing.
• 🧬 The tests revealed she had Friedreich's ataxia, a rare genetic disease affecting only 5,000 people in the US.
• 💔 Her older sister and younger brother also have the disease, with her sister's progression being similar, while her brother was diagnosed more recently.

Navigating Life with Friedreich's Ataxia

• ♿ Initially depressed and convinced no one would want her, Fiona struggled with the reality of her diagnosis and the prognosis of losing speech and sight.
• 🚶‍♀️ She transitioned from walking to using a cane, which surprisingly brought her empathy from others, highlighting the impact of visible disability.
• 🤝 Her relationship with her mother, strained by years of gaslighting, has improved through honest conversations and her mother's willingness to apologize and listen.

Comedy and Future Prospects

• 🎤 Fiona found her voice in comedy, using her experiences to fuel her act and even performing on Kill Tony, which significantly changed her life.
• ✈️ Touring as a comedian in a wheelchair presents challenges, particularly with airline accessibility, requiring her to be a strong self-advocate.
• 🔬 She is actively participating in clinical trials, holding onto hope for gene therapy and advancements that could potentially restore her ability to walk.

Personal Reflections and Embarrassing Moments

• 😅 Embarrassing moments include being denied service at a bar on her 21st birthday due to her speech and walking, and her wheelchair battery dying while crossing a street.
• 💖 She describes her fiancé, Matt, as someone who sees her before the wheelchair, valuing his genuine acceptance.
• ✨ Fiona advises her 16-year-old self to trust her instincts and not doubt herself, knowing she was right about her condition all along.