An Open Letter about OCNDS by Carley Faith Callahan
Okur-Chung Neurodevelopmental Development Syndrome, also known as OCNDS, is a rare genetic disorder that brings a unique set of challenges to the children diagnosed with it and their families. These challenges can look like speech impairment, delay in brain development, and physical movement abilities. It might be easy for you and I in this room can do a situp, but their brains might not connect, making it harder for them to complete this task. This can span over a lifetime, impacting development, learning, and behaviour. While OCNDS is rare, this does not mean it is not important to research and help find a solution. Having a kid with OCNDS can be overwhelming, but also very rewarding at the same time.
Children with OCNDS often require a more needing approach when it comes to care, including many different doctors, speech therapists, occupational therapists, physical therapists, and behavioural therapists. Accessing these specialised services can be financially tough for some, especially when considering the frequency needed to maximise a child's full potential. Funding can directly eliminate these financial burdens, ensuring that families can afford the necessary therapies and medical care without facing financial hardship.
Beyond direct therapies, funding is important for research into OCNDS. As a rare condition, research efforts are often underfunded compared to more common disorders like autism, speech and hearing impairments, ADHD, and more. However, research is the key to understanding OCNDS and ultimately improving the lives of those affected. Funding can fuel important scientific research, leading to new diagnoses, treatments, and long-term management strategies.
The impact of OCNDS goes far beyond the individual child. Families often face significant emotional and social challenges. Parents may need to take time off work or even change careers to provide the care their child needs. Siblings may experience their own unique set of emotions and adjustments. Funding can support families providing support groups, respic care, and educational resources fitting the specific needs of OCNDS families. Parents may face challenges in not seeing their kids have friends come over and play or hang out.
My best friend has OCNDS and autism. I see her shine every single day, inside and outside of school. But just like everyone, she has her struggles. Every one of us in this room can express our feelings in a way that just comes naturally to us. But her brain functions a little differently than ours. If we get mad, we can easily show that in a way that is easy. But it is harder for her to express how she is feeling. Some days, she will act physically towards others just so that she can express how she is feeling, not with the intention to hurt others. With donations, we will be able to do more research. With that research, maybe she would be able to walk into class one day without a fidget toy in her hand. And maybe she will be able to do a proper jumping jack while still having a smile on her face. This would not only change her, it would change me and her family as we watch her grow.
Investing in the OCNDS community is not just an act of compassion; it's an investment in human potential. Donations can significantly impact the developmental research of children with OCNDS, allowing them to reach their fullest abilities. By providing funding for research, we can empower these children to thrive and ensure that their families are not left to face challenges alone. The rarity of OCNDS should not change the urgency of our support; rather, it should encourage us to work harder in our commitment to ensuring that every child, regardless of how rare their condition is or no condition at all, has the opportunity to live a meaningful and fulfilling life.