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.
Wednesday, July 24, 2013
Sophia on round 3 of IVIG for ROHHAD
Last week Miss Sophia (check out her site at Sophia's Journey) had another round of IVIG. Her mother has been tirelessly working to get Miss Sophia to Hopkins for the past 2 years for treatment but with money being tight and having other children they have not been able to get there yet. Her current hospital will only administer the IVIG treatments right now. It's very hard to watch your child go through the pain and suffering. I wish I was closer to help them out. I am always thinking of our dearest friends with the biggest hearts in MA.
Love you guys......keep us updated on Miss Sophie
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ROHHAD in Ireland
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
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