Beyond Disintegration

Anna is of the founding members of Beyond Disintegration and our Multilingual Outreach Coordinator as well as Jordi’s mom. #BeyondDisintegration #ChildhoodDisintegrativeDisorder #RareDisease #MedicalResearch #ParentAdvocacy

Beyond Disintegration was started by a group of mothers whose children lived through something most people have never heard of: catastrophic, unexplained developmental regression. #BeyondDisintegration #ChildhoodDisintegrativeDisorder #RareDisease #MedicalResearch #ParentAdvocacy

When something cannot be properly named, categorized, or tracked, it becomes easier for it to disappear from research, funding, and public understanding. #regression #childhooddisintegrativedisorder #beyonddisintegration #medicalresearch #childhoodregression

This Mother’s Day, we’re holding space for the mothers whose journeys don’t fit neatly inside greeting cards. #happymothersday #mothersday #parentingspecialneeds #specialneedsparenting #childhooddisintegrativedisorder #regression

Emmett was four and a half when the child we knew — the one you see at the top of this screen — was just gone overnight. Every test came back normal. We can’t move forward without answers. #ChildhoodDisintegrativeDisorder #regression #medicalmystery #medicalresearch

Our founder’s journey #childhooddisintegrativedisorder #regression #beyonddisintegration #medicalmystery #medicalresearch

Beyond Disintegration is a new organization focused on unexplained childhood developmental regression — and the urgent need for research, answers, and recognition. Follow along. Share. Help us push this forward. #BeyondDisintegration #ChildhoodDisintegrativeDisorder #Regression