Knobloch Syndrome is an under-researched and poorly understood condition, largely due to its rarity. For many families like ours, the journey to diagnosis is often filled with confusion, misinformation, and a lack of proper communication from medical professionals. This documentary aims to shed light on these challenges and advocates for better support systems for those affected by this rare condition.

 

- Raise Awareness: Educate the public, medical community, and policymakers about Knobloch Syndrome and the profound challenges faced by families. Many parents, like us, we left feeling confused and blamed due to poor communication from medical professionals. Our family was completely unaware of how severely our children were affected. We were told they needed glasses but never informed that they were legally blind. This lack of critical information led to a devastating moment when the school requested a meeting, only for us to be ambushed by a group of 12 people—including representatives from DCFS, doctors, counselors, and teachers—who questioned whether we were neglecting our children’s needs. In reality, we had been taking them to eye checkups every six months, unaware of the severity of their condition. This documentary will share stories like ours to show the gaps in communication and care.

 

- Advocate for Research and Better Diagnosis: Encourage more genetic research and testing for Knobloch Syndrome, which could lead to earlier diagnoses and better treatment options. If we had been informed sooner about the severity of our children’s condition, we could have sought proper resources and tools to support their development from an early age. This is why genetic testing and more thorough communication between doctors and families is essential.

 

- Inspire Action: Motivate donors, organizations, and governments to fund research, support advocacy, and improve the lives of those living with rare diseases. The emotional and psychological toll on families like ours can be overwhelming, especially when blindsided by accusations of neglect due to the medical system's failure to properly inform us about our children’s needs. We hope this documentary will inspire action to ensure that other families don’t go through similar experiences.

 

- Highlight Resilience: Showcase the determination and courage of individuals like Jack and Colleen, who continue to thrive despite their challenges. Our story is just one example of how families can rise above confusion and adversity, but the resilience of those living with Knobloch Syndrome should be recognized and celebrated. Jack and Colleen’s success as actors and models is a testament to their strength, and we hope their story inspires others facing similar struggles.