Meet Willany

Willany was born without any signs of illness. He seemed like a perfectly healthy baby. He drank his bottle, ate fruit purées, and although he was a little slow to crawl, he could sit independently and pull himself up in the playpen.

At one point, he lost his balance while sitting and did not try to catch himself. That gave me a strange feeling in my stomach. He also began vomiting more often and refused warm meals. The pediatrician reassured us, saying he just needed a little more time.

When Willany was 1.5 years old, he caught a virus. Normally, that would not have been a problem. But this time was different. His fever rose quickly, and he developed epilepsy. He was admitted to the hospital with severe dystonia. At first, doctors could not find the cause. After being transferred to a university hospital, we were told a few days later that Willany had an abnormality in the white matter of his brain. Our world collapsed.

Today, with medication for dystonia and ongoing clinical care, Willany feels well. He is now 3.5 years old and makes progress in his own way, in small steps. Daily life includes supports that help him and our family, including a PEG tube, a standing frame, and a walking aid. He has also undergone brain surgery, a third ventriculostomy, to relieve pressure in his head.

The most important thing is that we make Willany feel loved and allow him to experience the beautiful parts of life. We help him become aware of his body through dancing and music, always at his own pace.

Willany cannot speak, but that does not mean he does not communicate. On the contrary, he teaches us how to enjoy the smallest things, a kiss, a smile, someone gently tickling his hand. As his mother, I have learned to see the world through his eyes. Sometimes that lens shows chaos, but it also shows calm, trees and animals, and quiet moments filled with simple love.

Take your time, and you will see that so many beautiful things still exist, even with a diagnosis that makes you fear the worst. His voice is ours.

There is hope and there is love. Together, they give strength.