Join Parent Advisory Board member, Rhiannon Cramer, for our monthly OCNDS family Zoom call where families can connect, ask questions and share their stories. This Friday, July 9th, at 4pm Eastern Time (here is a website to convert the time to your time zone: https://www.thetimezoneconverter.com/) Topic: CSNK2A1/OCNDS Monthly Family Zoom Call Time: Jul 9,...
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“Most parents thankfully don’t know what it is like staying up all night to make sure your child is still breathing while monitoring their heart rate. Or even having to make that choice to even give rescue medications to stop a medical event. The ever-present parental terror that exists on a daily basis.” By...
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by Rhiannon Cramer Days The sun rises up, the sun lowers down The child does not sleep The child breaths and that is our need The sun rises up again The physical therapist comes again The occupational therapist comes again The doctor appointments to be made again The sun is at midday The feeding...
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By Rhiannon Cramer I wanted to take a moment to say how thankful I am for the OCNDS community and to tell a little of our story and journey. Our daughter’s problems were evident by the second week of her life. This turned our lives into a journey that has been a long difficult...
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Rhiannon Cramer is the head liaison for the closed OCNDS Facebook group. She created the Facebook group in 2016 to help families connect after her daughter, Cordelia, was diagnosed with OCNDS. Cordelia was the one of original five children identified in the first published research paper describing OCNDS. We are grateful to Rhiannon for...
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