Understanding
Okur-Chung Neurodevelopmental Syndrome
The Power of Support & Community
Written by Aryana Adeline Valle-Portela from her interview with Jacquie Lopez
Reflecting on her journey, Jacquie described the difficult and prolonged journey to an OCNDS diagnosis for her daughter Madison Rose Solar. From the start, her daughter exhibited signs that something was different, but years passed before they received a clear answer. Each year brought new challenges, from the difficulties of finding informed clinicians to the overwhelming responsibility of daily care with limited resources. A definitive diagnosis didn’t come until age 12, leaving the family in a state of prolonged uncertainty and frustration. The absence of answers and support left them feeling isolated as they navigated the complexities of raising a child with an undiagnosed condition.
For Jacquie, the most valuable lesson learned through her journey with Madison's OCNDS diagnosis was the importance of support. The CSNK2A1 Foundation’s sense of community and unity has been a lifeline for her family. What started as a small and isolated community became a family, with members who shared their experiences and provided invaluable knowledge. This personalized support has been a blessing, allowing families to come together and navigate challenges in ways they never could have on their own. Jacquie described the foundation as a source of existential support, where every member is both knowledgeable and empathetic. Her connection with the foundation has given her the strength to continue fighting for her daughter’s future, with renewed hope for the growth of research and a potential cure for OCNDS.
Looking to the future, Jacquie is hopeful for tremendous progress in OCNDS research. She dreams of a potential cure, especially for younger generations, and hopes that with ongoing advancements in research, such as studies with mice and zebrafish—the future will bring more effective treatments, and that one day, OCNDS will no longer be as mysterious or misunderstood. As a dedicated member of the CSNK2A1 Foundation, Jacquie stays involved because she believes in the power of community and is motivated by the collective mission to improve the lives of those affected by OCNDS.