One in a million. Fight for independence

Kuba's Story

Our son Kuba developed normally until the age of two. That’s when he had his first epileptic seizure.

After that, the seizures became more frequent. We were desperate for answers—scared, exhausted, and heartbroken. No one could explain what was happening to our only child. Doctors ran test after test, but it took months before anyone suggested a genetic screening.

Eventually, we got an answer—though not the one we hoped for. Kuba has a rare genetic condition caused by a deletion on chromosome 2, specifically 2q22.3–2q23.1.

We had never heard of this before.

The condition is called MAND (or MBD5-associated neurodevelopmental disorder). It’s extremely rare—affecting roughly 1 in a million people. To date, only about 600 cases have been diagnosed worldwide.

Suddenly, everything began to make sense: the sleepless nights, Kuba’s developmental delays, his behavior, and his struggles with speech.

MAND can cause:

Epilepsy

Global developmental and speech delay (Kuba is still non-verbal)

Autism spectrum disorder

Sleep disturbances

ADHD

Sensory processing issues

Severe behavioral challenges

Poor coordination

Even heart problems

There is no cure. But there are ways to support Kuba’s development and help him manage these challenges—especially with early and consistent therapy focused on communication, behavior, and life skills.

Our dream is to give Kuba every possible chance to become independent one day.

In Poland, there are special therapy camps and consultations that help children like Kuba develop vital skills. We’ve already attended a few—and to our great joy, he loved it. He engaged, cooperated, and tried so hard to learn.

But these treatments are expensive. We've reached a point where we have no other option but to ask for help.

If you are able to support Kuba’s journey—even in a small way—it would mean the world to us. Your kindness could make a real difference in his life.

We are deeply grateful for any donation, share, or encouraging word.

Thank you for being a part of Kuba’s story.