Miea has two rare disorders the First is Sturge Weber Syndrome the second is RASA 1. The Fist disorder causes seizures which damage her brain causing her both mental and physical delay and retardation. She needs frequent trips to the specialist which our insurance doesn't cover. There are only 2 specialit's in the US we are lucky to live only 6 hours from the world's most renowned specialist. Her care requires regular PT, OT, speech and educational treatments. As well as special equipment, shoes,braces ect.
When Miea was 4 months old she starting having seizure we would soon find out why and that there is no cure. That is medication didn't work they would be re moving that part of her brain. So far he brain is intact but she has suffered Alot of damage to the left side of her brain causing her to be mentally, physically and emotionally delayed. We have no idea what will be in store for her neither do the Dr's. To this day there is no other child or adult that they know of like her. The second condition is the same gene mutation my son passed away fron at 13 days of life. He had 3 brain surgeries before I ever even held him.
For Miea to have both rare disorders we don't ever know what's going to happen next. The Sturge Weber Syndrome mass covers the left side of her brain and the RASA 1 we have no idea how this will effect her. She is a carrier so like me if she were to ever have a child that child would have it and like my son may die or have other defects.
I know it all seems like a lot but on top of it all my husband suffered a brain aneurysm and was laid off from his job. That is why we have turned to this site in hopes of bringing our family hope.
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