News January 2026

While other children enjoy the snow, Bilal hardly ever goes outside – his wheelchair has difficulty navigating snowdrifts. And long power, water and heat outages make every day a challenge for his mother.

Bilal has Emanuel syndrome. We know of only two children with this diagnosis in Ukraine. This rare disease manifests itself in hearing impairment, lack of speech, muscle weakness, developmental delay, and congenital heart defects.

The boy cannot hear, speak, or walk. His whole world is his mother, who is by his side every day, caring for him, hugging him, and loving him.

Maryam is waiting for warmer weather. In spring, when there is more sun, her son's condition usually stabilises. She is trying her best to get Bilal on his feet. So far, there has been no noticeable progress, but the woman is not giving up.

Due to severe pain and intestinal disorders, the boy hardly sleeps and constantly needs pain relief. He often cries and asks to be picked up.

It took a long time to find the right specialised nutrition for Bilal. The only formula that his body can digest is Resource Junior. Maryam feeds her son every three hours, including at night. One can costing 611 UAH is used per day. About 18,324 UAH is needed per month, which is an unaffordable amount for the family.

Let's work together to provide Bilal with this vital formula for six months!