Hydrocephalus Help

Hello!  My name is Lori K. Moyer and I'm a mother, sister, wife, aunt, coworker, neighbor, volunteer, friend, daughter in law, granddaughter, cousin, triathlete...and a survivor.  I have hydrocephalus ("water on the brain"). I was born with the disease and in my 41 years have endured 35 surgeries.  I'm not sure if there are more to come.  Hydrocephalus is a very unpredictable beast and thankfully a shunt helps to keep it slightly controlled.  But when the shunt fails, surgery is required to fix it.  This past year, I was hospitalized 5 times and had 9 surgeries.  Most of those were in my brain/head, 2 procedures done while I was awake.  Hydrocephalus is an accumulation of brain fluid that my body does not have the means to control on its own.  Most people have this ability to control it and do not require additional help.  I was born without this ablility and so a shunt was placed in my brain when I was stable enough to survive the surgery at 3 months old.  Most children born with this at that time either became incapacitated or died.  My doctors told my parents that if I lived past 3 years of age, my life would be difficult and I would struggle to keep up, mentally and physically.  It was said that my life would be faced with challenges and there was always the possibility of death if my shunt failed and they weren't able to fix it.  The shunt is on the left side of my brain and goes through the center to draw fluid from the right side.  It drains into a tube that then drains into my heart and out with blood.  So in essence I also have a heart condition because it "houses" the other part of the shunt.  I am proud to say that I made it through...I have survived this far.  And most of the things my doctors told me I couldn't do or that my body wouldn't do, I pushed myself and did them anyway.  The most important accomplishment...my son. They told me I had a small chance of getting pregnant, that if I became pregnant I would most likely not carry to term.  That I would have issues and be high risk and my son could have issues too.  I am proud to say I had an uneventful pregnancy and have a happy, healthy little boy.  He is the love of my life.  During my hospitilizations, I struggled with not being able to take care of him.  Luckily, he's a strong, caring, kind, thoughtful boy and he and his dad leaned on each other and we all pulled each other through it. 
On the bad side of all this, my family has been straddled with many medical bills.  I'm never sure when I'll go to the hospital again and as much as I try to plan to pay things on time, I never know when another bill is coming. 
I am asking for your help.  To help me take care of these bills and hopefully move past this difficult, emotionally  and financially, time for me and my family.  I am also hoping this puts some attention on this disease and helps others suffering from it.  If I can bring awareness, that would be a great reward!  I was 31 years old when I met my first fellow Hydrocephalic.  And I've met many since then.  We all have different stories and experiences with the disease and I'm hoping to not only help my family but to help others.  There is no cure.  There is no guarantee that the surgeries will fix the problem.  Most of the time, the surgery creates another problem because my body rejects the "fix".  Eventually it settles down...but I am never sure for how long.  I've missed time from my family, my son, work, my friends, helping others.  I'd like to get back to that part of my life.  I've always said "yes" when others have said "no" and I'd like to stop worrying so much about my financial future, my health future...and live right now in this moment.   
Please feel free to pass this along, as well.   Any attention that I can bring to this disease makes it all worth it! 
I appreciate you taking the time to read about me.