One in a million. Fight for independence

Kuba's development has been normal until the age of two. This is when his first epilepsy attack occurred.

Ever since the attacks became more and more frequent. We still didn't know what what causing them and we were desperate to find out what is happening to our only child. Doctors started to run some tests on him to find out what was causing epilepsy. It took months before they have decided to run a genetic test.

It turned out that part of the gene is missing, specifically it is a deletion of chromosome 2 of the long arm of the band 2q22.3-2q23.1

We didn't even know what does it mean.

Everything started to make sense, sleepless nights, Kuba's behaviour and him not talking too much...Turns out this genetic disease causes epilepsy, global development and speech delay (Kuba is still non verbal), autism, sleep problems, behavioural issues. Kuba has just been diagnosed with ADHD and we are tried find right medication for him but no luck.

This genetic disease - it's called MAND or MBD5 is very rare. In fact it occurs at one in a million. So far there are roughly only 300 people around the world to be diagnosed with it.

There is no cure for this disease but there are various ways to help Kuba's development - particular with his speech, anger control, behaviour issues. Our goal is to help in every way we can so one day he can be independant. There are special camps which could help in developing various skills which in his case are necessary for further functioning.

At this point we have no other choice but ask for help to raise funds to cover the costs of all the treatments and specialist consultations over in Poland. We've already been to one and it turned out that Kuba really likes and tries to cooperate.

We would be grateful for any help.