Evan Russak Needs Brain Surgery! #Chiari warrior

Hi Friends and Family of the Russaks,

My name is Jaime Mason. Finette Russak and I met in Lyme Disease support groups almost ten years ago. As we shared the struggles of being ill while raising families, and at the same time being caregivers for our equally ill children, we were able to get to know each other. Any time I needed help, she wouldn’t hesitate to offer what she could. She is a tough lady with a soft heart who is fiercely devoted to her family. Sadly, her son Evan has been going through a lot lately with his declining health, trying to help care for his very medically disabled Mom, and navigating through family divorce turmoil that makes my heart break for them. 

Evan needs urgent life  preserving brain surgery, and Finette no longer has a source of funds to pay for it. Evan and his Mom, Finette, are pained to even be in this situation and so I have started this fundraiser to raise funds for Finette on behalf of her son, in hopes that Evan will be able to have this essential brain surgery. I  will let Evan tell his story in his own words below.  I am very grateful for your support, donating as well as sharing this to all those in your social media networks ( facebook, twitter, and elsewhere). Thank you again!

From Evan:
Dear Family and Friends,

I have been meeting the challenge of chronic debilitating illness for much of my 29 years of life. I am nearly bedbound since the age of 15 when I was forced to leave high school and all of my friends, hopes and dreams behind. It has taken us more than a decade and dozens of specialists to finally determine that I have several genetic disorders as well as chronic Tick Borne Illness (Lyme Disease plus others).

In addition, I have Chiari I malformation . When teachers would joke that my brains are too big for my head, it turned out to be no joke! About ten years ago, while we were putting all of my symptoms and physician opinions together, my neurosurgeon diagnosed the Chiari, along with piecing the puzzle of my illnesses together. It turns out that there are many complex patients like myself because these groups of conditions are often comorbidant (appear together).

What is Chiari I Malformation?
Chiari malformations occur when there is a lack of space for the cerebellum, which is the lower part of the brain that controls balance and coordination. It also controls automatic (autonomic) functions. When the space at the bottom back of the skull is smaller than it should be, the cerebellum and the brainstem may be pushed downward. The pressure on the cerebellum and brainstem can block the flow of cerebrospinal fluid and cause an array of symptoms. Along with dizziness, vision problems, and issues with fine motor skills, I experience extreme intracranial pressure headaches that are unbearable. It is hard to think without almost passing out, and my short term and working memories are badly affected.

Why I now need urgent surgery:
In addition to Chiari, I have dysautonomia (a malfunction of the autonomic/automatic nervous system. This controls breathing, pulse, blood pressure and everything the body can do without thinking about it). I also have a connective tissue disorder, Ehlers Danlos Syndrome Type 3, as well as Demyelinating Neuropathy, Immune System Dysfunction, and ongoing debilitating symptoms from chronic Lyme Disease/Bartonella/Babesia/Mycoplasma.
Unfortunately, each condition makes the others worse and they have overlapping symptoms.

Brain surgery is not usually done until symptoms are severe and treatments fail. After a decade I am at that point and my neurosurgeon has advised that due to how badly my symptoms are affecting my daily life, that surgical intervention is urgently recommended. Without surgery it is likely that I will deteriorate further and risk permanent damage. If I get the surgery promptly, the likelihood for me to regain some improvement in quality of life is high. This will enable the treatments for my other conditions to be more effective.  Even if I remain disabled, we hope the remaining symptoms become more manageable.

I also want to be well enough to further assist my mother, herself very disabled from many of the same medical conditions but now also battling Stage 4 cancer under extreme circumstances. You see, a year ago my father decided to escape from being held accountable for a spending addiction that financially ruined the family, and not only left the home and filed for divorce, but he has caused a rift so large that despite our large family, my mother has no one but myself to rely on.

Why do I need funds for surgery?:
 My health insurance will not cover this expensive brain surgery because it is out of state and out of network. Due to my complex medical conditions and the particular expertise of my neurosurgeon who has perfected procedures that are the safest for those like myself, it is my best hope for him do the surgery. My mother and myself never thought we would find ourselves in such a dire and distressing position, needing to ask others for financial help.

My mother anticipated my surgery and knew of the cost (she herself had the same surgery last year, but for acquired Chiari), and so she had set aside a large fund for this. This would have covered more than half of my medical fees. But my father manipulated the money from the bank account and took it for himself. He did this knowing about, and despite, my need for brain surgery and even after promising me that he would not delay my surgery over this money.  He has caused several weeks delay already and has made this fundraiser regrettably necessary. Mom is now  too ill to manage this on her own, so I am so appreciative that my Mom’s friend Jaime is doing this for my Mom, on my behalf.

I truly appreciate you taking the time to read about me, and I would be grateful if you would consider a donation and/or share this link in your social network groups. With sincere thanks, Evan Russak


What the donations will be used for:
Evan will need immediate funds for the surgery scheduled February 26, 2019; (hospital stay, surgeon and staff),  transportation to and from the surgeon/hospital ( in Long Island NY and Evan will travel from the Boston area and/or central New Jersey with his mother who will assist him with her aide), and rehab during the post op period. Also, the money will be for the pre op testing as well as meals and lodging immediately before and after the procedure, until it is safe for Evan to travel back to a residence.

Evan’s needs are very high and we hope to raise a total of $75,000 for his brain surgery:  $72,000 for quoted actual medical costs, due Feb 22,2019, plus $3,000 for related pre and post operative costs. Evan may need future fundraisers for the possibility of follow up surgeries or extended physical therapy, but for now, he just needs to get past this hurdle.

Brief note from Finette Russak:
 It is distressing and embarrassing to find myself seeking donations, yet I am extremely grateful for the help from my friend Jaime.  I was left without funds for my own son’s surgery, by his father's actions, despite my  having set the money aside. I wish to sincerely thank each and every one who has taken the time to visit and read about us. Please consider donating and/or sharing our Gofundme link as far and wide as you can.
It is my deep hope to be able to continue battling my cancer and other disabling conditions, in order to help Evan get past this, and that his surgery is successful enough to bring him some relief and even a small measure of return of some quality of life.