Fundraiser for saving Yuliia's life
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Hello!
My name is Yuliia Tyshchenko. I was born on June 22, 1991. I live in Cherkasy, Ukraine.
I was six months old when my Mom noticed that something was wrong with me. After the examination held in my hometown, the doctors diagnosed me with spinal amyotrophy (SMA). In July 1992, the diagnosis was confirmed during the examination in Kyiv, Ukraine.
It is a rare genetic disease. Its main manifestation is muscle weakness which increases gradually. Nowadays, there is no treatment that eliminates the cause of the disease, i.e. the breakdown in communication between the spinal cord and the muscles. Practically, all the muscles – starting from the foot muscles and ending up with the muscles involved in the process of breathing – weaken. A person with a diagnosis like this loses the ability to walk, and a very strong scoliosis starts to gradually develop. It becomes more and more difficult to breathe and to clear throat. That means any bronchitis can quickly turn into a life-threatening pneumonia. I had pneumonia twice.
My parents did everything they could to improve my health, or at least to keep it with no further deterioration. The pessimistic forecasts of doctors did not come true for it turned out I had a milder form of the disease, though I was never able to walk unaided, and the only thing I could do was to stand for a few minutes leaning on the couch, or to make two or three steps along it.
In 1998, my ability to stand was gone; I could not even stand when leaning on the support or with assistance. Then, my scoliosis began to develop. First it was hardly visible, but I was growing up, and the muscles that support the spine were getting weaker… The growth spurt in the age from 11 to 15 changed my back unrecognizably and made it a real curve. I was diagnosed with S-shaped kyphoscoliosis IV degree.
It is something that cannot be avoided in my condition. If the spine of an average person starts to curve it is possible to cope with the problem using special exercises and swimming. However, when you have SMA there is no way to strengthen your muscles so that they can keep the spine straight. Wearing a special body jacket (a spinal assistant) is not the way out either. Sitting with such a jacket on is quite a difficult thing to do. It sticks into your body, squeezes it so that it becomes difficult to breathe, and what is more, it makes your back even weaker.
That was why I wore no body jackets. My orthopedist did not allow me to put them on for me not to become weak at all. The progress of the curvature would cause me inconvenience, but I tried to pay less attention to it. I could not walk so the school teachers would come to me and teach me two or three hours a day. After my 13th birthday, when my spine was strongly curved already, it was quite difficult for me to sit for 5-7 lessons as the did at school, so I had to have a rest, change the position of my body, or lie down to relieve my spine.
Change of my body position, a little rest while lying made it possible to sit again, and I went on doing my lessons, playing or handiworking. When I was 6, I asked my Mom to teach me to hand-knit as well as she did, after that went on and I mastered crochet and embroidery, but it was beadweaving that caught me fancy most of all. When I was lucky to get a special wheelchair I could enjoy a great freedom of movement, so I spent lots of time outdoors when the weather was warm. In winter, I could easily catch bronchitis for I quickly felt cold when sitting in a wheelchair, besides warm clothing would make my sitting even more difficult, so I rarely spent my time outdoors in winter.
Time passed by… I would get honorary certificates every year of my studying at school, but when I graduated from it I did not dare to continue my education. It would have been difficult for me to attend lectures at the university regularly because of my scoliosis and the fact that the higher educational establishments were not accommodated for the people in wheelchairs. No other options were offered to me that time. So I made up my mind to self-study.
When I was in the 10th grade I started to sell my beaded items, so I tried to make it my job after graduating from school. I began to actually succeed in it, but sadly as it was the state of my spine got worse and I had to quit beadweaving where I had to sit still for a long time. At the age of 20, I started to work in the Internet, I earned money by copywriting. I was pretty good in that, and the work was in plenty, but at the age of 22, I realized I could not work like that anymore because even painkillers could not kill the pain in my back at the end of my working day. I had to nearly quit it.
Today, my spine has a curvature of 150°. I have a constant back pain. It is a bit easier for me to lie than to sit, but just a bit. This year, I do not sleep well for I wake up very often because my back hurts and I need to change the position of my body. It is difficult for me to keep balance while sitting, my body inclines to the left side more and more, and as a result my left leg suffers, it grows numb and hurts. All my internal organs are compressed, and it is more and more difficult for me to breathe when I sit.
If nothing is done in the nearest future my further life will be very hard. It will be extremely difficult for me to sit, so I will sit less, and in a couple of years I will spend most of my day lying. That means I won’t be able to work anymore, to practice my hobby, or to just spend time outdoors. At some point, the spine will finally constrict my lungs, and I will suffocate.
The orthopedic surgeons here in Ukraine have never offered me to do something with my scoliosis. Nowadays, they operate for scoliosis in this country, but never on those who have SMA. The main thing is that a person with such a diagnosis requires a special anesthesia, and there can be complications during the surgery, because the condition of the muscles and lungs differs a lot from that of a normal person.
None of local surgeons would take risks to operate on such a person like me. Two of my friends with scoliosis that also resulted from spinal amyotrophy faced the same problem some time ago. They requested medical assistance from the foreign surgeons, and they were operated in ORTON Orthopaedic Hospital (Helsinki, Finland). The surgeons of the Hospital have been successfully operating on people with SMA for 20 years already. They fix the supporting titanium rods to the spine, these rods straighten the spine first, and then securely support it for a lifetime.
I learned about this possibility only in 2013, and I started looking for information on how people underwent such a surgery and how the recovery went. I got in touch with those who had been operated on. The experience of those people convinced me that the surgery was justified and brought the desired result. I wrote a letter to the Hospital, and they invited me for examination.
Then, my father and me flew to Finland. We managed to do it only in autumn 2014, because the rapid growth of EUR/UAH exchange rate prevented us to do it earlier. In ORTON Orthopaedic Hospital, I was examined thoroughly: they made sure the state of my lungs would allow me to withstand long anesthesia, they X-rayed me to see the condition of my spine, and checked the extent it can be aligned to.
During the consultation with the surgeon and the anesthesiologist, we were told that the surgery is possible. As a result of the surgery, the curvature of my spine will become 104° instead of the present 150°, the spine will be fixed securely and will not curve again. It will be a great relief for me! My heart, lungs, stomach and my other organs will occupy their more correct positions, and will work better. Now that I know the consequences of no surgery performed, it is simply unthinkable for me to refuse it. It will provide me with an opportunity to continue my active life, even though moving in a wheelchair, but I will be able to breathe freely, to sit properly. That’s a lot and that is incredibly important for me!
The cost of the surgery (it is called spondylodesis) is 39,695 euros. The surgery must be performed as soon as possible while my spine is still amenable to correction, and my lungs can withstand a long-lasting narcosis. I do not have much time to pay the bill from the Hospital and to prepare for the surgery. It is planned for September 2015.
My family lives very modestly, and it is a vast amount of money for us to raise by ourselves, especially when the time is limited. But I do know that it is possible when the whole world is involved in! Please help me! You can do it two ways: either by transferring any affordable for you sum of money to one of my accounts, or by sharing this information with your friends. I will appreciate any help from you. Thank you in advance!
In Russian: http://www.facebook.com/sbor.yule/photos/a.784126094995937.1073741829.783275278414352/791074027634477/?type=1&theater
Epicrisis, cost estimate papers from ORTON Orthopaedic Hospital: https://www.facebook.com/media/set/?set=a.906913196017046.1073741827.906904786017887&type=1
———-
Follow me on
Facebook (eng) http://www.facebook.com/pages/Help-Yuliia/906904786017887
Facebook (rus) http://www.facebook.com/sbor.yule
You also can follow me add me on Facebook http://www.facebook.com/profile.php?id=100008961550405
Blogs: helpul.wordpress.com
———-
The easy-to-understand information about my main disease: http://www.curesma.org/sma/about-sma/
The surgery that I will undergo (computer animation): https://www.youtube.com/watch?v=WBIf4AQj5s0
My name is Yuliia Tyshchenko. I was born on June 22, 1991. I live in Cherkasy, Ukraine.
I was six months old when my Mom noticed that something was wrong with me. After the examination held in my hometown, the doctors diagnosed me with spinal amyotrophy (SMA). In July 1992, the diagnosis was confirmed during the examination in Kyiv, Ukraine.
It is a rare genetic disease. Its main manifestation is muscle weakness which increases gradually. Nowadays, there is no treatment that eliminates the cause of the disease, i.e. the breakdown in communication between the spinal cord and the muscles. Practically, all the muscles – starting from the foot muscles and ending up with the muscles involved in the process of breathing – weaken. A person with a diagnosis like this loses the ability to walk, and a very strong scoliosis starts to gradually develop. It becomes more and more difficult to breathe and to clear throat. That means any bronchitis can quickly turn into a life-threatening pneumonia. I had pneumonia twice.
My parents did everything they could to improve my health, or at least to keep it with no further deterioration. The pessimistic forecasts of doctors did not come true for it turned out I had a milder form of the disease, though I was never able to walk unaided, and the only thing I could do was to stand for a few minutes leaning on the couch, or to make two or three steps along it.
In 1998, my ability to stand was gone; I could not even stand when leaning on the support or with assistance. Then, my scoliosis began to develop. First it was hardly visible, but I was growing up, and the muscles that support the spine were getting weaker… The growth spurt in the age from 11 to 15 changed my back unrecognizably and made it a real curve. I was diagnosed with S-shaped kyphoscoliosis IV degree.
It is something that cannot be avoided in my condition. If the spine of an average person starts to curve it is possible to cope with the problem using special exercises and swimming. However, when you have SMA there is no way to strengthen your muscles so that they can keep the spine straight. Wearing a special body jacket (a spinal assistant) is not the way out either. Sitting with such a jacket on is quite a difficult thing to do. It sticks into your body, squeezes it so that it becomes difficult to breathe, and what is more, it makes your back even weaker.
That was why I wore no body jackets. My orthopedist did not allow me to put them on for me not to become weak at all. The progress of the curvature would cause me inconvenience, but I tried to pay less attention to it. I could not walk so the school teachers would come to me and teach me two or three hours a day. After my 13th birthday, when my spine was strongly curved already, it was quite difficult for me to sit for 5-7 lessons as the did at school, so I had to have a rest, change the position of my body, or lie down to relieve my spine.
Change of my body position, a little rest while lying made it possible to sit again, and I went on doing my lessons, playing or handiworking. When I was 6, I asked my Mom to teach me to hand-knit as well as she did, after that went on and I mastered crochet and embroidery, but it was beadweaving that caught me fancy most of all. When I was lucky to get a special wheelchair I could enjoy a great freedom of movement, so I spent lots of time outdoors when the weather was warm. In winter, I could easily catch bronchitis for I quickly felt cold when sitting in a wheelchair, besides warm clothing would make my sitting even more difficult, so I rarely spent my time outdoors in winter.
Time passed by… I would get honorary certificates every year of my studying at school, but when I graduated from it I did not dare to continue my education. It would have been difficult for me to attend lectures at the university regularly because of my scoliosis and the fact that the higher educational establishments were not accommodated for the people in wheelchairs. No other options were offered to me that time. So I made up my mind to self-study.
When I was in the 10th grade I started to sell my beaded items, so I tried to make it my job after graduating from school. I began to actually succeed in it, but sadly as it was the state of my spine got worse and I had to quit beadweaving where I had to sit still for a long time. At the age of 20, I started to work in the Internet, I earned money by copywriting. I was pretty good in that, and the work was in plenty, but at the age of 22, I realized I could not work like that anymore because even painkillers could not kill the pain in my back at the end of my working day. I had to nearly quit it.
Today, my spine has a curvature of 150°. I have a constant back pain. It is a bit easier for me to lie than to sit, but just a bit. This year, I do not sleep well for I wake up very often because my back hurts and I need to change the position of my body. It is difficult for me to keep balance while sitting, my body inclines to the left side more and more, and as a result my left leg suffers, it grows numb and hurts. All my internal organs are compressed, and it is more and more difficult for me to breathe when I sit.
If nothing is done in the nearest future my further life will be very hard. It will be extremely difficult for me to sit, so I will sit less, and in a couple of years I will spend most of my day lying. That means I won’t be able to work anymore, to practice my hobby, or to just spend time outdoors. At some point, the spine will finally constrict my lungs, and I will suffocate.
The orthopedic surgeons here in Ukraine have never offered me to do something with my scoliosis. Nowadays, they operate for scoliosis in this country, but never on those who have SMA. The main thing is that a person with such a diagnosis requires a special anesthesia, and there can be complications during the surgery, because the condition of the muscles and lungs differs a lot from that of a normal person.
None of local surgeons would take risks to operate on such a person like me. Two of my friends with scoliosis that also resulted from spinal amyotrophy faced the same problem some time ago. They requested medical assistance from the foreign surgeons, and they were operated in ORTON Orthopaedic Hospital (Helsinki, Finland). The surgeons of the Hospital have been successfully operating on people with SMA for 20 years already. They fix the supporting titanium rods to the spine, these rods straighten the spine first, and then securely support it for a lifetime.
I learned about this possibility only in 2013, and I started looking for information on how people underwent such a surgery and how the recovery went. I got in touch with those who had been operated on. The experience of those people convinced me that the surgery was justified and brought the desired result. I wrote a letter to the Hospital, and they invited me for examination.
Then, my father and me flew to Finland. We managed to do it only in autumn 2014, because the rapid growth of EUR/UAH exchange rate prevented us to do it earlier. In ORTON Orthopaedic Hospital, I was examined thoroughly: they made sure the state of my lungs would allow me to withstand long anesthesia, they X-rayed me to see the condition of my spine, and checked the extent it can be aligned to.
During the consultation with the surgeon and the anesthesiologist, we were told that the surgery is possible. As a result of the surgery, the curvature of my spine will become 104° instead of the present 150°, the spine will be fixed securely and will not curve again. It will be a great relief for me! My heart, lungs, stomach and my other organs will occupy their more correct positions, and will work better. Now that I know the consequences of no surgery performed, it is simply unthinkable for me to refuse it. It will provide me with an opportunity to continue my active life, even though moving in a wheelchair, but I will be able to breathe freely, to sit properly. That’s a lot and that is incredibly important for me!
The cost of the surgery (it is called spondylodesis) is 39,695 euros. The surgery must be performed as soon as possible while my spine is still amenable to correction, and my lungs can withstand a long-lasting narcosis. I do not have much time to pay the bill from the Hospital and to prepare for the surgery. It is planned for September 2015.
My family lives very modestly, and it is a vast amount of money for us to raise by ourselves, especially when the time is limited. But I do know that it is possible when the whole world is involved in! Please help me! You can do it two ways: either by transferring any affordable for you sum of money to one of my accounts, or by sharing this information with your friends. I will appreciate any help from you. Thank you in advance!
In Russian: http://www.facebook.com/sbor.yule/photos/a.784126094995937.1073741829.783275278414352/791074027634477/?type=1&theater
Epicrisis, cost estimate papers from ORTON Orthopaedic Hospital: https://www.facebook.com/media/set/?set=a.906913196017046.1073741827.906904786017887&type=1
———-
Follow me on
Facebook (eng) http://www.facebook.com/pages/Help-Yuliia/906904786017887
Facebook (rus) http://www.facebook.com/sbor.yule
You also can follow me add me on Facebook http://www.facebook.com/profile.php?id=100008961550405
Blogs: helpul.wordpress.com
———-
The easy-to-understand information about my main disease: http://www.curesma.org/sma/about-sma/
The surgery that I will undergo (computer animation): https://www.youtube.com/watch?v=WBIf4AQj5s0
Organizer
Алена Грушина
Organizer
Helsinki
