Our son was sentenced to DMD❗️Save little Franio’s life❗️

When we were holding our son in our arms for the first time, our hearts were filled with love. We were looking at his small hands and into his vulnerable eyes that observed the world with interest. We dreamt about walks, teaching him how to ride a bike, laughing and playing together, hiking in the mountains and enjoying every moment.

Today, we are looking into our son’s trustful eyes and all of the dreams are replaced by only one – to win the race against time and save his life.

Franio was born healthy in August 2024. When it comes to psychomotor development, he was ahead of his peers when he was only 3 months old – he was able to lift his head, follow toys with his eyes and smile when he heard our voices. Everything indicated that there was a wonderful and peaceful future ahead of us...

It changed in December 2024 when Franio was hospitalised due to pneumonia. As if this was not enough, his small body had to fight against enterovirus, coronavirus and parainfluenza. He was brave, he was fighting hard, but at that time, we noticed that something was wrong.

One day before Christmas Eve, in a hospital room full of children and parents waiting to be discharged, a paediatric neurologist decided to test Franio’s blood for Duchenne muscular dystrophy (DMD). Our hearts skipped a beat. We could not believe that our son might struggle with a serious disease. We were almost sure that his body was weakened by the hospital stay and viruses.

When we were back home, his progress began slowing down and we felt that something bad had been going on. Each day brought new concerns, and we were observing Franio’s every single move with fear. But we still believed that the DMD suspicion was excessive, the doctors were overly careful and everything was going to be all right...

Unfortunately, at the end of January 2025 our worst suspicions were confirmed. Duchenne muscular dystrophy – a sentence that takes away everything we dreamt of. Our son is almost 6 months old and he already has to face this cruel disease that slowly weakens his muscles.

Until recently, it was believed there was no cure for DMD. It is a terminal disease as it causes degeneration of all voluntary muscles. At first, it affects mobility and then, takes away LIFE.

Usually, at the age of 10, boys are not able to walk and have to use a wheelchair – this process is irreversible. DMD progresses each week, the prognosis is cruel – the muscles responsible for breathing and pumping blood also undergo degradation. It means dying slowly while being aware that there is no treatment. At the age of 20, the patients pass away after a long, slow and painful fight that nobody can win...

Until recently, the DMD diagnosis meant death sentence that could not be appealed. But with the development of medicine, miracles happen. There is a gene therapy abroad that can save patients. Its price is exorbitant as it costs a couple million PLN, but it gives hope.

Our dream is for our son to receive this miraculous medicine. We are looking for help abroad but it is of the utmost importance for Franek to be under the best possible care as quickly as possible. Gene therapy may stop the disease but it cannot reverse the damage that was already done by it. Unfortunately, the costs of treatment and rehabilitation are very high and we find it more and more difficult to cover them on our own.

The fight against DMD costs more than we can afford but noting is impossible for the parents of a terminally ill child. We are going to fight for each day, each chance and each zloty. Please, help us make this most important dream come true – for our son to
live. Together we can perform a miracle.

Franio’s Parents