In January I told the world about Heather, who after 18 years of searching, was finally diagnosed with ROHHAD after seeing Haven's special on Mystery Diagnosis. On Friday, May 27th, Heather passed away leaving us with a void in our hearts but strength knowing another angel is watching over all of our babies.
We are deeply saddened by the sudden passing of Heather and I will hopefully be able to talk to her mother tomorrow via phone. I have wanted to give them grieving time.
We love you dearly Heather and thank you for letting us know and learn about you.
Always ~~~~
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
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ROHHAD in Ireland
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