The boy who is being killed by his own body. Save Karol or he will die suffering...

Our little boy is not being killed by a disease but by his own body. Karol’s own spine is his worst, deadly enemy... As time goes by, the deformation worsens. The spine is compressing the organs in the chest.  Karol’s trachea has already been damaged and there is barely place for the lungs.  A surgery is the only way to save our child! It would be the 7th surgery of this type in the world, and an extremely expensive one but it can save something priceless  - our son’s life.  Otherwise, Karol will soon need to be on ventilator and will face a slow death and suffering, and then there will be nobody to be saved anymore...

Every parent thinks their child is special. We would like our son to be perfectly normal... He is not - there are only 150 people like him in the whole world. In Poland there are only 4. Karol suffers from Beals syndrome, which is a very rare genetic disease. Our son’s mind is totally healthy. He is a smart and curious boy... It is his body that is his enemy... People suffering from Beals syndrome have many skeletal and muscular problems and multiple joint contractures. Karol has a disproportionately long and bent spine that has become his killer.  Today the curvature is 85-degree and progressing. It is compressing the internal organs – the trachea, lungs and pushing the ribs forward – it may already be pressing on the stomach – Karol is unable to eat alone and vomits frequently. Our son is the only person in the world with such a severe form of the disease.

When he was born he was curled up in a ball.  It was not possible to straighten him up - to do it you would have had to break all his bones... Our little boy’s skin was oversensitive and he experienced pain from touch. He was placed in an incubator. It came as a shock for us as prenatal tests did not find anything abnormal! At first, the doctors thought it was Edwards syndrome, a different rare genetic disease which is fatal. We were told that our son had two weeks to live. I cannot describe how we felt as parents. We were looking at our long-awaited child, and could barely see him through our tears. Our son was in horrible pain and we could not do anything to help him.

When the doctors told us the right diagnosis we thought that the death was gone. People suffering from Beals syndrome live normally and start their own families. It turned out however, that Karol’s condition was still life-threatening. We have experienced the tragedy of seeing our child dying on our hands twice. It is a miracle that Karol is still alive... The first time it happened was a normal Sunday morning. Breakfast, a lazy morning with the family... Suddenly, Karol’s little face turned blue. He was fighting for his breath. He was dying. We run out of our house with Karol on our hands, shouting for help in despair, knowing that the ambulance would not come in time anyway... We resuscitated Karol in the street.  A crowd of neighbors gathered. Among them was a doctor, an anesthesiologist. She intubated Karol who had already lost his consciousness... She saved his life. The ambulance arrived 7 minutes later. Our son was just seconds away from death.

It turned out that there was compression on the trachea. Every attempt at extubating ended in Karol losing his breath again. He needed to have a tracheostomy tube inserted which since then has protected his trachea from being crushed. Then we learned that this condition is life-threatening because the spine is compressing the internal organs. We started looking for help for our child but death came again... The second time Karol was dying was at the Children’s Memorial Health Institute in Warsaw. It was Friday, January 12, 2018. Our son was smiling at us – we live to see him happy – and then suddenly he turned blue and there was plenty of blood in his mouth and tracheostomy tube. We will never forget what happened then. Within a few minutes Karol lost 400 ml of blood.  He developed circulatory arrest. He developed cardiac arrest. It turned out that the tube damaged his trachea. A team of 20 people fought to save our son’s life. Had we been at home that day, Karol would have died on our hands.

We know that our luck bank is down to zero. We do not want to and we cannot let death come to us again! We know that this time we will lose. Karol’s condition worsens dramatically... If we do not stop it, Karol’s spine curvature will progress. It will destroy the lungs and other organs, heart included... Because of the fact that Karol suffers from the most severe form of extremely rare genetic syndrome there is no ready-to-use method of treatment.  It must be devised from scratch... We have been in touch with the doctors from the University of Michigan in the US for a few months, who cooperate with bioengineers from Boston and can to save our son’s life by reconstructing his upper respiratory tract. Healthcare in the US is extremely expensive, and the cost of the surgery which is the cost of our son’s life is horrendous. However, we have no other option. Unless we act, Karol will die suffering.

The surgery which is an option for Karol will be the 7th surgery of this type in the world. If it is successful, Karol will be able to breathe, eat and speak... His body will be strong enough to undergo a spine surgery in Poland. The pressure on his internal organs will be relieved. Karol will be like a perfectly healthy child. He will be alive...

Please consider helping Karol - without help our little boy is doomed to die. The death will be slow and extremely painful. Karol’s disease is rare, complex and cruel. It is killing him. Any amount that you are able to contribute will mean so much to us. This is a life-saving surgery for Karol.