I can only stand! how does a girl live who, due to a rare illness, cannot sit
32-year-old Joana Klich cannot sit due to a difficult diagnosis: the girl has spinal atrophy. This rare genetic disorder causes neurons in the spinal cord to malfunction.
Due to a failure in the transmission of signals from the nervous system to the muscles, Joanna is practically unable to move independently.
“I need help with all my daily activities. Even the toilet for me should be specialized. I am in pain every day because my knees are too weak to support my body weight,” she says.
Joan now gets around using an upright wheelchair. She uses a ventilator to breathe while she sleeps — her lungs become weaker when she lies down. But the situation could worsen at any moment. The girl has to carefully monitor the weight, otherwise her knees will not be able to cope with the load.
“I’m angry that I can’t do what I used to do. I feel like my left knee is about to break. I can’t imagine what will happen if I have to spend the rest of my life in a lying position, ”Klich shares with tears.
The girl’s mother claims that up to two years she could sit, like all other children, but Joan herself does not remember this.
According to her, until the age of 21, her condition was difficult, but still acceptable for independent living. As a child, she did not feel special and had many friends, and as a student she even managed to move to the UK and start her own business.
Now Joana is supported by her boyfriend, 46-year-old Dariusz Suchowiak. He not only helps her in all household chores, but also monitors her morale.
Joana is collecting donations online — she needs money for maintenance therapy. In the future, she dreams of opening a fund for people with disabilities and providing support for everyone who needs it.
