Understanding
Okur-Chung Neurodevelopmental Syndrome
We Took it One Step at a Time – a Rare Disease Day Reflection
by Erica Trevino
Today is an amazing day to spread Awareness for Rare Disease Day!!
It has been a long journey for Jordan. It took 5 years to finally find a diagnosis. We had lost hope in find answers until his genetic doctor told us two amazing doctors - Dr. Okur and Dr. Chung - had answers. We were so happy and blessed to finally have answers for our son, Jordan.
We didn't know what OCNDS was. We looked online for answers and found nothing but a Facebook group. We decided to join the Facebook support group...and they have been nothing but a fully supportive, amazing community that understands us every step of the way!!
Today is an amazing day to spread Awareness for Rare Disease Day!!
It has been a long journey for Jordan. It took 5 years to finally find a diagnosis. We had lost hope in find answers until his genetic doctor told us two amazing doctors - Dr. Okur and Dr. Chung - had answers. We were so happy and blessed to finally have answers for our son, Jordan.
We didn't know what OCNDS was. We looked online for answers and found nothing but a Facebook group. We decided to join the Facebook support group...and they have been nothing but a fully supportive, amazing community that understands us every step of the way!!
After many obstacles, Jordan always has a smile on his face!! When we started this journey, we had no idea how hard it was going to be to help him, understand him, and what the future held; we just took it one step of a time...And now Jordan is doing amazing. Jordan is 8 now. We have learned so much from him, in understanding him. Jordan has been a wonderful blessing. We couldn't be happier Parents! Jordan loves to dance. He loves music and having fun with family!! He adores his siblings!!