Understanding
Okur-Chung Neurodevelopmental Syndrome
In honor of the countless families all too aware that today is Rare Disease Day
by Keri Sullivan Ninness
In 2016 we became members of a club we never would have chosen- our 3.5-year-old boy was diagnosed with a new syndrome, a disease so rare only 5 others in the world had been diagnosed. We left that appointment with almost no information on how to go forward.
7 years later, with handfuls of new children being diagnosed with Okur-Chung Neurodevelopmental Syndrome OCNDS each week, we know so much more.
We know early intervention is critical. It is crucial. Vital.
We know access to expert specialists and strong relationships with pediatricians are critical. Vital. Crucial.
We know our schools and support services are critical, vital, crucial.
We know support from our families and community are critical, vital and crucial.
We also know that our son, his OCNDS buddies, and our other rare disease friends are of immeasurable worth, of significant value to the world. They are funny, witty, resilient, strong, capable, kind, smart kids and we are the very luckiest to walk alongside them.
In 2016 we became members of a club we never would have chosen- our 3.5-year-old boy was diagnosed with a new syndrome, a disease so rare only 5 others in the world had been diagnosed. We left that appointment with almost no information on how to go forward.
7 years later, with handfuls of new children being diagnosed with Okur-Chung Neurodevelopmental Syndrome OCNDS each week, we know so much more.
We know early intervention is critical. It is crucial. Vital.
We know access to expert specialists and strong relationships with pediatricians are critical. Vital. Crucial.
We know our schools and support services are critical, vital, crucial.
We know support from our families and community are critical, vital and crucial.
We also know that our son, his OCNDS buddies, and our other rare disease friends are of immeasurable worth, of significant value to the world. They are funny, witty, resilient, strong, capable, kind, smart kids and we are the very luckiest to walk alongside them.
I am not immune to wishing some of Thomas’s (and admittedly our family’s) suffering away. But as author and activist Katherine Wolf (Hope Heals) says, “the hard story and the good story can be the same story.” We are eternally grateful to get a front row seat to Thomas’s beautiful, hard, good story.