I would like to thank you in advance for taking the time to read our story!
Hi, my name is Maria Tsipas, I live in Canada and I would like to tell you my story, or rather my daughter's story! I have not been able to hug my child in almost three years!
My beautiful daughter, Sylvie, fell ill on September of 2014. She was 19 years old living on her own and going to school. Her dream was to become a neuroscientist. On the eve of September 23rd, 2014 she went to lie down to go to sleep. Upon lying down she felt excruciating pain shoot up her spine and radiate around her ribcage. She called me hysterically, as she had never experienced anything close to this before. I rushed to her apartment and an ambulance was called and she was transported to the hospital. She was admitted for a week and after several tests failed to pinpoint the cause of her pain, they sent her home with a lot of medications. That's when the true nightmare began. Three hospitalizations later and numerous specialists we were sent home with more medications, but no answers. Doctors would say she needs an MRI, but once admitted to the hospital, no MRI was ever performed. A neurologist even told her, and I quote: "pain never hurt anyone", and she needs to adapt. The pain was so extreme she could not walk, lie down or sit. She was taking medications every two hours 24/7. Every time she tried to lie down on her back, she would vomit from the severity of the pain. She could not lie on her sides either, as the pain radiated around both sides of the ribcage. She could barely sleep from the pain and could only lie with her bed raised at a 70 degree angle with gel ice packs to slightly numb the pain along her spine. Vibrations of any kind, like being in the ambulance, car, or being wheeled around in her wheelchair would cause even more pain. By mid-November, she was once again released from the hospital with no answers, and, by this point, the stress and exhaustion both physically and emotionally had taken a toll on me and I got sick with pneumonia and lost nearly 15 lbs. In order for me to take care of her, she had to move back home with me where I could have everything I needed to best take care of both of us.
She could not bear the weight of clothing on her spine, she could not wear a coat, she could not go up and down stairs, she became a prisoner in our home. She could not watch TV, the pain was too much to allow her to concentrate, she could not distract herself with anything. The worst part was that she could no longer read any books. The pain, exhaustion and fogginess from medications, made her incapable to focus and read, even if she could find the strength to hold a book. That was devastating to her. It did not take long for depression to set in.
Christmas rolled around and we thought we will get through this and hoped that this, whatever it was, would disappear as suddenly as it appeared. We do have free health care, but once doctors do the basic tests and rule out the obvious possible causes, they give up trying to figure things out or worst, they tell you it's "in your head". I had gone down this road before, as it took doctors many years of telling me "it's in my head" before I was diagnosed with a systemic autoimmune disease. Depression took hold of me. By the time 2015 rolled around, we had entered a dark tunnel with no end in sight. I was desperate to keep her spirits up and hold on to hope that things would get better . I would leave the house to run errands or get her medications and I would cry and cry so she would not see me. As any mother can relate, it is heartbreaking to watch your child suffer and know that there is so very little you can do to take away that suffering. For the first time in my life I asked my doctor for antidepressants. I could not hold it together and I needed to be strong for her.
Soon the only people she interacted with were doctors and her parents. She had nobody her age to talk to. Her world had become very small. Our entire extended family lived in Greece! We had no one to help us in any way.
They say, "when in Hell, keep walking", and that's what we did. We prayed and kept going. We make a point to notice all the miracles along the way, the little daily triumphs like reading a newspaper again, and doing little things that were impossible when she first got sick. I guess she did try to adapt to this cruel reality. She is one of the strongest people I know. We are approaching the 3rd year mark and, while she has very sad and sometimes devastating days emotionally, when she wants to just give up...somehow, she finds the will and strength to keep on fighting. She plays this game she calls "the silver lining" where she tries to find the positive no matter how bad things are. This game and her faith, is what has kept her fighting even when she wanted to give up.
By the summer of 2016 it was clear that she wasn't getting any better, the medications had very little effect in lessening her pain and, because her immune system was so low from the illness and medications, she kept getting one infection after another. Finally, a doctor agreed to give her an MRI. She had the MRI at the end of November 2016, more than 2 years into this nightmare. We waited until February, 2017, to get the results of the MRI. They found a Tumor in her spine.
Sometimes, I wish the doctors that saw her could feel the extreme pain she feels for 10 minutes to understand a fraction of what she's gone through.
Then someone told me to reach out to the Mayo Clinic. I had no hope left of finding answers here in Canada, so I sent them her MRI. The Mayo Clinic has accepted her for evaluation and treatment. Finally a light at the end of our dark tunnel. OUR LAST HOPE to get answers and treatment.
An appointment was scheduled for June 21, 2017. I had to reschedule this appointment for July 25, even though that meant she would have to endure an extra month of pain before we go to the Mayo Clinic, but I needed more time to somehow raise the necessary funds for travel, lodging and the medical bills. A deposit of $7,000 US (appx. 9,500 Cdn) is required upon confirming the appointment. A minimum of one week as an outpatient, for the evaluation, and possibly longer if more diagnostic tests need to be performed.
I have no choice but to turn to all the caring and compassionate people around the world to help us raise the money we need in order to travel to the states. We need to raise $15,000 (Canadian dollars), for the evaluation at the Mayo clinic and also for travel and lodging expenses.
WE NEED TO RAISE THE FUNDS URGENTLY. I cannot reschedule this appointment again. I have to pay the deposit in order to keep this appointment. If she requires to stay longer for evaluation and treatment that cannot be done in Canada, then I would have to raise more money. But we will cross that bridge when and if we get there!
If you are able to donate, THANK YOU, from the bottom of our hearts. If you are unable to donate, please "donate" this letter and the link to this fundraising campaign to all your family and friends, even acquaintances. Every little bit will help us reach our goal!
Our faith is what has helped us keep fighting, when we could not find a way out of the dark tunnel. PLEASE HELP US REACH OUR GOAL. THIS TRULY IS OUR LAST HOPE!
Your prayers are also welcome!
THANK YOU SO MUCH
- Benita Schueder
- Elias Psarrologos
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