Our son’s life has a price❗️Help us save Leo!

A couple of days ago, our world fell apart. Our son, who was a healthy and cheerful boy, was diagnosed with a cruel genetic disorder. We had to take actions right away to find a proper treatment. When we heard the amount, our world fell apart again...

It turned out that our son is suffering from metachromatic leukodystrophy – a difficult and very rare genetic disorder. The only chance to save our son’s life is gene therapy which is available only in China and with documented results in stopping the progression of the disease. 

Leo is almost 2 years old – he is a cheerful boy, curious about the world and he is learning to walk, speak and discover the world. He loves animals and spreads a smile to every person he meets.

Since his birth, his development was regular, correct. As parents, we were celebrating each milestone together with him. Unfortunately, one day, we noticed that he started moving in an unusual way.

We were at hospital, at the neurology ward, twice but the doctors were not able to diagnose Leo and they did not notice anything out of the ordinary. As parents, we felt something was wrong. We decided to do genetic tests.

We received results that sounded like a sentence to us – metachromatic leukodystrophy (MLD) – a very rare, terminal disease that destroys the nervous system and causes loss of mobility.

Metachromatic leukodystrophy results in degradation of myelin sheaths in the brain and spinal cord and in consequence, neural signalling stops working. Without treatment Leo will slowly lose mobility, sight, hearing, speech and contact with us – his parents. The death comes usually within 2 years after the diagnosis.

This disease takes lives ruthlessly. Piece by piece. A we, parents, can only watch his suffering. Our hearts are broken into a million pieces. Leo is our beloved and only child. Our whole world.

We did everything we could in Poland and in Europe but the only chance to save his life is gene therapy in China. It is an advanced treatment that gives real hope when it comes to stopping the disease and saving our son. This therapy provides the gen that is damaged in Leo’s body and this way the progression of the disease is stopped.

Time is running up – each day matters.

The sooner we start the treatment, the greater the chance that Leo will live. The therapy does not repair the damages caused by the disease but can stop it.

The cost of treatment, transport, specialist care is half a million zlotys. After the treatment, Leo is going to need expensive physiotherapy every day. This amount is unimaginable for one family, especially in such a short time but it can be raised with the help of good-hearted people.

We are asking for your help from the bottom of our hearts. We cannot do this on our own…

Leo’s Parents