One person's story stood out to me as it involved things out of her control and it hit home. My Brother had a Brain injury in 2008 that damaged his frontal lobe. It was a very difficult time for him and our family.
This person does not have a Brain Injury but she has a Brain disorder and the Medical costs are over 6 figures. She's had Brain surgery, Spinal cord surgery and her daughter is diagnosed with this rare disorder Chiari Malformation of the Brain.
I'd love to turn this into something positive and if each of you could just donate $1 maybe we can save a family and bring awareness to the disorder.
Brooke is a great person. I've talked to her several times now and she's also a volunteer patient advocate for ASAP.org. She help patients get ready for surgery and helps the emotionally with the process. She's very active in the organization and even told me if this donation grew too large she'd donate the rest to ASAP.org to raise awareness.
I will not be taking any money from donations received and if you don't want to donate then you don't have to. If you want to help, please donate to ASAP.org as an alternative.
I cannot properly verify her story but I have contacted ASAP.org and verified she is a member and does have the condition. Your donation is optional and will go to her. I cannot make any guarantees on any accuracy of Medical Bill amounts, and anything involving her story. I believed her and I want to help. I talked to a few of her friends as well and I was comfortable in this decision.
This his a portion of her story
"The diagnosis that I have is Chiari Malformation of the Brain. It is where the cerabellar tonsils hurniate into the neck. I have had to have majoy brain surgery because of it. The other condition that I have is Spina bifida occulta. Spina bifida is when the spinal cord hurniates through the back, yet still causes a lot of physical issues.
I was decompressed for my Chiari in December of 2007. They had to go in and make room for my brain that was bigger than my skull. I know have a titanium plate in my head. My sypmtoms before surgery were, sever headackes,intermitent attachardia, excruciation wide sprad body pain. With the spina bifida acculta I was quckly losing the use of my legs. I could hardly walk and to get up any kind of stairs I woulod have to crawl. I was detethered in Noevember of 2008. Both surgeries were done in Aurora CO.
Here I am 5 yrs later and looking at the posibility of yet another surgery. They headache have come back and I have been unable to work do to the sypmtoms that I still have. All I want it to be well.
I am not only a patient but I am also a volunteer advocate for other patients with the same diagnosis that I have. The organization that I volunteer for I (A)merica (S)yrigomyelia & (C)hiari (A)lliance Project ASAP. I have helped patients mentally prepare for surgery, help engourage them right after surgery, and help ecourage them through recovery by help them cope with their pain after their surgery.
This money would be such a blessing not only for me but also for my fellow chiarians. A lot of this money would go to ASAP for Chiari and associated disorders. This money would also give me an opportunity to help raise awarenss for Chiari Malformation, awareness the we desperately need.
My daughter was diangnosed before I was and because no one in the medical community where we were living knew what it was I made it my mission to make sure that one day my daughter would be able too travel anywhere in the world and if she were to collaps or something that she would be able to go to any medical facility and be treated accurately. In order for this dream to come true, I have to create awareness."
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