There is presently NO CURE for (PTC) only treatments such as lumbar punctures aka spinal taps, shunting, pain management, and experimental drugs to reduce swelling and intracranial pressure.
Meiyah is a tenaciously determined and brave young woman. PTC can be fatal following certain procedures, many live only a few years after treatment begins. After the diagnosis she had to make a brave choice, to move more than a thousand miles away where there not only was not family, but there weren't knowledgeable practitioners for PTC.
Though Meiyah's schooling is paid for by scholarship, an amazing feat within itself for Meiyah, lots of the medication is not. Her medications are as much or more than most mortgages.
Meiyah has had many spinal taps and many quality of life procedures. Just two years ago, give or take, she had brain surgery to relieve the pressure on her optic nerve. At that time a splint was placed in an artery to open a narrow passageway. This experimental procedure successful opened the artery and allowed the excess spinal fluid to be reabsorbed by the body.
It was determined earlier this summer that the procedure needed to be redone on the right side of her brain. The left side also needs to be addressed as well and will be at a later date.
The surgery took place this past Tuesday and initially was deemed a success. It was projected that she would return home to convalesce the next day; however, almost immediately she began to have complications. She underwent an exploratory procedure on yesterday to determine where problem was originating but no answer was found. Today she began to experience double vision and intermittent hearing loss.
Understandably Meiyah's parents have stood by her side. They both have been blessed with employers who have held their positions for them, but without pay. They have insurance but as most of these procedures and medications are experimental they are not covered.
This summer has be extremely taxing as Meiyah has spent more time in specialist and emergency rooms than she has at home. My sister and brother-in-law have not asked for help. But that by no means means that they don't need it.
They both have had to remain at the hospital as someone has to be by Meiyah's side constantly. Right now they are in dire need of finances for medical bills, living expenses, and monthly expenses.
I am asking that you help them with ANYTHING you can, even if it's a dollar. For those of us with children or persons we take care of with medical needs the physical, mental, and financial burdens are humongous, yet we do it gratefully for those we love.
Meiyah remains hospitalized at the writing of this request. Please help them and please feel free to forward this fundraiser to as many of your friends as you can.
I will keep you updated on her progress. Again, Tammy and Robert need your help now.
Please pray that an answer is found soon as Meiyah is returning to Washington to complete her senior year....WITH HONORS!
The proudest aunt in the world
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