Family, Friends, acquaintances, Friends of Friends & anyone out there who has a loved one who is suffering an illness or disease that has no cure or known treatment. Please put yourself in our place for one moment and help us raise funds for my sister so we can provide her with the care and treatments necessary to try to slow down the progression of her disease. If unable to help financially then please pray for her and share her story.
"It's not how much you give but how much love you put into giving" Mother Theresa
Her name is Olga and she's only 44 years old, single and lived with my mom whom she cared for. She worked for Special Education Department with a school district in Texas for as long as I can remember. She had been healthy except for the common cold now and then or at least thought so until about 6 months ago when her life changed drastically. She started off feeling sick to her stomach and had no energy nor strength to crawl out of bed. She went to a local Dr. who said she had a viral infection. Days, weeks went by and her health was not improving so she went back to the Dr who now said she had h pylori (bacteria in the stomach) causing all the nausea and upset stomach. He prescribed antibiotics and said she should be fine in a few days. By this time she had already been out sick quite a few days from work.
A few more days and weeks passed and her health was deteriorating. She lost 10 pounds within a few weeks, would get hiccups late at night, had a burning sensation in her stomach & back making it uncomfortable to tolerate any clothing coming into contact with her skin, painful to walk and even impossible to sleep. By then she also had numbness in her right hand. The discomfort in her back turned to pain that was excruciating, she woke up several hours throughout the night and was only able to sleep during the day for a few hours. She went to the emergency room a couple of times and was told it was the stomach bacteria the previous Dr. had diagnosed & disregarded her numbness and all other symptoms.
Months went by and it was now December 2013 when all of a sudden she wakes up and tells one of my sisters that her legs felt very weak. She didn't think much of it blaming it on her weight loss and that she wasn't strong enough yet. That day as she was walking her right leg buckled, she fell down twice and couldn't get back up. She also noticed that her right arm was weak. What was happening to her? This is my sister who has been healthy and independent never asking anyone for any help! Why were the Dr.'s disregarding all her symptoms? Why was she losing strength in her body?
Later that day she was taken to the hospital. By then she was barely able to walk, she had to be held up by two people in order to stumble into the car. Within minutes we arrived to the ER and she couldn't get out of the car on her own not even with assistance. She had to be carried off the car and into a wheelchair. They ran numerous tests (spinal tap, MRI, bloodwork, CT Scans, along with many more) and she was admitted immediately. The following morning when she woke up her right side was completely paralyzed. The neurologist came in and said the tests showed she had inflammation in the spinal cord and suspected multiple sclerosis but needed further testing to find out what type it was.
Results finally came in and she was diagnosed with Transverse Myelitis which is a rare neurological condition consisting of inflammation of the spinal cord. It is an immune-mediated disorder of the central nervous system. The immune system is the body's defense against foreign invaders (viruses and/or bacteria). Normally, the cells that are part of the immune system have the ability to distinguish an infectious agent from a person's body; however, sometimes some of these cells become "˜confused' and mistakenly attack an organ within a person (this is known as autoimmunity). Attacks of the inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars and interrupts communications between the nerves in the spinal cord and the rest of the body. There is no cure; however, physicians may use various treatments to slow down the progression of it. It seemed all the symptoms she had after the stomach bacteria were all due to this disorder.
The Dr immediately ordered a strong dose of intravenous steroids to bring the swelling down and she was transferred to intensive care for about 2 weeks. During that time she was still paralyzed, couldn't get out of bed, had to be assisted to get up, and even eat. After two weeks of intravenous steroids she was released from the hospital and admitted to a rehabilitation hospital. She was wheelchair bound and was receiving 3 hours daily of occupational and physical therapy to regain strength, coordination & range of motion. Slowly she was starting to regain some kind of feeling. There she learned how to maneuver her way around with a wheelchair and take care of herself. Therapy was painful and very exhausting, but I'm proud to say it paid off because she was released using a walker on December 24!
Finally life was starting to fall back into place, she could at least get around with the assistance of a walker and she was ready to get back to her house and her job!
Getting back home was quite a challenge though because now the mother that she cared for had to take care of her. They made the best of it and life was semi normal at this point. She returned to work part time and had my sister & niece drive her to and from work since she was not able to drive yet. At her workplace her boss made any necessary changes for her to get around on her walker. Therapy continued at home and she was no longer using the walker but using a cane! :) Undoubtedly she was on her way to recovery! It only lasted a few weeks though because towards the beginning of February I received a phone call that she had a flare up and was wheelchair bound once again and put on oral steroids. She was not able to go to work for a few days and by now her employer who had been empathetic was starting to pressure her into resigning for lack of sick days and medical leave. She requested an extension but employers are allowed to only give 3 months of medical leave and hers ended mid March. A week after her flare up our mother fell ill with a massive stroke and passed away in a week . Throughout all this her therapy was at a standby until after mom's services. She had to face reality and go back home...an empty home...my mother was no longer going to be there to help her!! I thank God for my nieces and 3 sisters who live close by and have been caring for her ever since.
Her therapy continued and two Dr.'s said she could not return to work until she improved. Her employer did not agree with this so they let her go after 22 years of service and dedication. She is now unemployed, without insurance and with numerous hospital and medical bills. Dr. told her the disorder was progressing rapidly and was recently referred to a neurologist in Houston for a second opinion. She is having to travel to Houston and staying in hotels for up to 2-3 days due to appointments and testing. One of the tests done there has concluded she now has Neuromyelitis Optica (NMO). This is a rare relapsing autoimmune disorder that preferentially causes inflammation in the optic nerve and spinal cord. It is characterized by extensive Transvere Myelitis. Her vision is getting blurry due to this, the burning sensation on her stomach and back returned and her back pain is worse than ever. The pain medications she's taking do not take away the pain.
Due to her unemployment status her insurance has ended and now has to pay it out of pocket each month. This couldn't have come at a worst time because now more than ever she needs it for doctors' appointments and therapy treatments. The specialist is suggesting she receives a treatment called Rituxibam which is an experimental treatment not covered by her insurance. Rituximab is a chimeric monoclonal antibody used to treat autoimmune disorders. This is her only hope to try to slow down the progression.
She does not qualify for any kind of health program, she has applied for disability and it's pending. She was told it may take up to 1 year. 1 year that she cannot wait on.
I hope she can walk again and ask YOU to walk along with us on this painful journey. You can help her walk by making a monetary donation to help cover the insurance, start the rituximab treatment and continue receiving occupational and physical therapies.
I have learned something through all this, God gives his hardest battles to his toughest soldiers...Olga is the toughest, strongest person...she is my hero & with his grace and your generosity I have faith my sister will walk and become independent once again.
Much love, health and blessings to each of you,
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