Here is our story...
Our roller coaster of life began in 2005 when I suffered a life altering back injury at work which resulted in back surgery and a year of recovery to be able to even walk without excruciating pain. During this time, my wife was my caregiver, the main bread winner and an amazing mother to our two children. It was a difficult time and she was there in every aspect to care, support and keep our family going. I had just begun to get back into the workforce,with many restrictions, and unable to physically do the jobs in which I loved and was trained in. I was finally bringing in a limited income and hoping to ease the workload of my wife when in December of 2007 she suffered a grand mal seizure at work. For the first time in over 2 years we had two incomes only to be told that not only could she not go back to work tomorrow, she may never be able to work again. On December 28, 2007, we were given news that changed our lives forever. My wife was diagnosed with a brain tumor, in close proximity to her brain stem. We began a whirlwind of doctors and tests, medical expenses and denial of disability for my wife. We were told everything from there is nothing wrong with her to it is inoperable and there is nothing we can do. Meanwhile, she was still having grand mal seizures, extreme migraines, fainting and loss of balance constantly. My children have endured ambulances, hospitals and more fear and confusion than they deserve. It took us 3 years to get the disability for my wife that she deserved. Unfortunately, by then we had lost our home and everything we had worked so hard for, so we began to try to dig ourselves out of the enormous hole that we had been forced into. During which she would have done anything to be allowed to return to work.
As if we needed more health problems to endure, we spent my wife's birthday in 2009 in the hospital when I was diagnosed with Type II Diabetes. When it rains, it pours.
Fast Forward to December 22, 2012...
I received a phone call from my kids during a meeting at the Fire Department that mom is having multiple seizures and they don't know what to do. She was taken to Olean General Hospital and we were told that the tumor had grown and was compressing her brain stem. They also saw swelling on the brain stem, so she was being transported to Buffalo General Hospital. After hours and hours of waiting to no avail, we were told that Neurosurgery had signed off, she was fine but they were going to admit her for observation. It was now the 23rd, our children were 2 hours away and Christmas is two days away. I asked to see the neurologist. He confirmed that they had signed off and it was OK to just continue to monitor it as an outpatient process and there was nothing that were currently going to do. Therefore, we chose to sign my wife out and get her home for Christmas.
Nearly two months later, after many requests, we received the medical reports from Buffalo General and were astonished at what they failed to tell us. The medical reports showed that my wife's tumor had grown drastically, it was indeed pressing on her brain stem, which is now tilted to the left from the pressure. It had also caused three bulging discs in her neck. As well as a secondary tumor that was now present behind her right ear. I was not told any of this and had I been, there is NO way I would've have taken her home. Regardless of Christmas or anything else. I had enough. Five years of conflicting reports, prescription after prescription, seizure studies, medical tests and 16 MRIs and she was only getting worse.
I made a drastic decision, with local job market and lack of competent medical care, I moved my family 740 miles away to Myrtle Beach, SC with the hope and determination to get my wife into the hands of the best neurologists in the country at Duke University Medical Center. I had an amazing job, I could finally give my family the life they deserved, my wife the security she needed to concentrate on getting better, and we would do it in our most favorite place to be.
History felt as though it needed to repeat itself, my job fell through and I was once again in a situation that I could not have foreseen. I pounded the pavement, took anything I could get, and once again lost everything in the process. Finally, after selling almost everything we own to survive, I have found what I believe to be a good paying job that I enjoy and can excel at. Everything I do is for my family, I'm not proud to say this but this included walking the 46 miles to work because we had no gas money and I couldn't afford to take a day off. In the last nine months, I have been forced to push every bill and loan to the side, so that every dime was spent on food for my family, a roof over their heads, and taking care of my wife.
What we are facing now...
On November 6, 2013 my wife suffered yet another seizure and was seen at Waccamaw Medical Center. We were in the process of getting her to Duke but with current finances were unable to make the 2 hour trip as of yet. The seizure was a grand reminder that regardless of anything else, we could no longer wait. I was blessed with a family member who gave us a contact at Duke. He instructed my wife to send all medical reports and scans to him via UPS and he would do the consult over the phone free of charge. My first prayer had been answered. A few days after thanksgiving, we received the phone call that we had been waiting for. Duke confirmed that it was time for surgery. On January 8, 2014, my wife and I will travel to Duke Raleigh for an MRI and surgical consult. We have no idea what is in store but I do know this...
We can not afford the insurance that is offered through my work. My wife does have medicare but at 80 % coverage we are in for a mountain of medical bills on top of all my current past dues.
I need to know my children will be taken care of financially during the next few months while we fight for wife's life. My place of employment is supporting me 100% for everything I need, however, I have not been there for over a year, therefore, I do not have sick pay or personal leave. This has already affected us, for I have had to take off to care for my wife. We are faced with travel expenses for Duke is two hours away, we have discussed local care, but I know in my heart that God led me here to get her to Duke. One of our biggest needs and largest obstacles is that over the last nine months, selling to survive included our second vehicle. I need my children to have transportation to school and sports and most importantly to visit their mom in Raleigh.
By my calculations, due to medical issues beyond our control, we have lost in access of $500,000 since 2005 in lost wages and advancement of pay grades.
Asking for help is the hardest thing I have ever had to do and I know that there is people that have greater needs than I do, I am just at the end of my rope and don't know what else to do. I can not borrow for I know with the events of the coming months, I can not possibly pay it back let alone pay back people I already owe.
My wife is my world and my soul mate, please help me relieve some of this stress, I want nothing more than to be there for her, because I need her to use all of her energy to fight and survive and get better. Please pray for my family as I will continue to pray for each one of you and yours.
- Lex & Michelle Barker
- Sandra Smith
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