Hi my name is Haley!!
I wrote this with a bit of help... but it's in my words!
I'm hoping that with this story it will help people who do not know me understand what a Dural AVM is and why it is so important that I get the the surgery that will ultimately save my life.
I am 9 years old (well 10 on July 28th!) and was diagnosed with a rare brain injury called Arteriovenous Malformation on Jan 26th... I suffered two seizures and had to be rushed to the hospital by ambulance and have a bunch of tests done. That's when they found out I have this condition.
The condition I have is rare and only 1% of the population gets it and it's usually found in adults from the ages of 20-40yrs old, not young children like me. When found in a child it is very serious as my life span is shortened. I have a 6cm mass on the right side of my brain along with 5 other branches coming from my DAVM.
I went to sick kid's hospital in March and was told that there is nothing they can do for me. I now have a terminal illness and have been deemed inoperable.
The DAVM can rupture and kill me instantly or I can suffer strokes and seizures and become paralyzed. It makes life really hard right now trying to live each day like it's my last. My Mom is so worried about me even though I keep telling her it's all going to be okay. She keeps telling me that Kids should be able to live their life and have fun doing it. I keep telling her I am and that with everyone's help we are going to beat this!
The Dr.'s told me that as early as the end of this year I will start getting what is called a brain bleed. This will start to slowly kill my brain cells. If this happens it will cause me to have strokes, more seizures and slowly paralyze me.
I am fighting for my life and I need help doing it.
My Mommy & everyone at The Daisy Foundation have been doing fundraiser after fundraiser as we need to raise a lot of money to get me to the mayo clinic in the US since there aren't a lot of doctors who specialize in brain AVMS here in Canada.
After months of doing fundraisers The Daisy Foundation raised enough money for me to go to the Mayo Clinic for my consultation so off we went to Rochester, MN.
It took us 20hrs to drive there thanks to all the snow storms. It seemed like we would never arrive!
I had to spend and entire day having one test after another done to me. I hated having to have my blood taken!!
Once all that was done we got to meet a Dr. named Dr. Pollock. He is the dr. that told my Mom he could do a proceedure called the Gamma Knife. Once this is done, he said my DAVM would go away and I would be okay!
Well, on the Friday morning I had my first proceedure done. It was really scarry but I just kept telling myself I was gonna be okay after it was all done.
I still have to go back to the Mayo Clinic in the summer to have my last proceedure done. The Dr. said after that I only have to have an MRI done once a year to make sure I'm still okay.