Doctors said that she was doomed to move only in a wheelchair, but she was able to overcome both illness and bullying.
The genetic disease that struck Briton Sara-Louise Walker is really rare – one in 50 thousand babies is born with it. Children with patellar nail syndrome are born with nail atrophy, joint pathologies, with and without patellar anomalies. Sara-Louise was born with poorly formed kneecaps, her elbows twisted the other way, and later it became clear that she would not be able to stretch her arms either. When the girl was two years old, the doctors said that she would never learn to walk.
However, Sara-Louise’s mother, Elena, refused to sit back and watch her own child suffer, being confined to a wheelchair from birth.
“My mom became a role model for me,” says Sarah.
Learning to walk for the girl was almost a super task. Due to illness, Sarah’s legs were constantly bent. She was unable to unbend them. Therefore, up to two years old, the girl’s legs were constantly in bandages from the ankles to the very top – dense tight bandages made them straight. And only at two years old, Sarah was able to take the first steps with the help of her mother.
“Mom decided that I would have a normal life as much as possible,” says Sarah.
After the bandages were removed from the legs, mother began to teach her daughter to walk: slowly and very carefully. After all, the girl’s joints did not allow her to move normally. She could twist or dislocate her leg at any moment. Of course, this did not mean that Sarah was able to give up the wheelchair, she got tired very quickly.
“At school, I hated using a stroller, but there was no choice. They used to tease me as an invalid, they called me “stakes legs,” continues Sarah. “I learned to deal with it when I realized that people are attacking what they don’t understand.”
At the age of five, Sarah had to wear the Ilizarov apparatus, a device that stretched her muscles. This apparatus is attached to the legs with pins. Sarah still has deep pitting scars on her legs, and she is already 24 years old. The course of treatment was repeated twice more, when Sarah was 7, and then at 11 years old. Each time – four months.
“The doctors were hoping it would strengthen my muscles,” she explains.
During her childhood, Sarah underwent more than ten operations. Each time after surgery, she had to learn to walk again – through pain, through tears. And once the doctors decided to break her legs, hoping that this barbaric method would help correct her clubfoot. It didn’t help, Sarah just worn out one more time.
“Every time I screamed in pain. The pins in the Ilizarov apparatus were tightened all the time: if it hurts, then it works. It hurt terribly. Mom helped me learn to walk over and over again. But I will never let my disability determine my lifestyle, ”says Sarah.
The girl underwent the last operation when she was 18 years old. Until now, her life cannot be called full from the point of view of an ordinary healthy person, because she has to use a wheelchair, she still cannot walk for a long time and gets tired quickly. But Sarah is determined to train and do her best.
“I will have another operation soon. But I can handle. I hope that one day I will learn to ride a bike and be able to walk to the altar on my wedding day on my own feet, ”she says.