Fundraiser to save life! Little Leon needs urgent heart surgery to stay with us! Please help us!

Leon recently turned 4 years old and is our little sunshine. He is very cheerful and with his smile, he has a fantastic ability to steal the hearts of everyone around. With his spontaneity, courage and energy, he surprises everyone every day with his infectious personality! We cannot even imagine that this light may go out and plunge our world into darkness... Please, help us save our son!

In the crowd of healthy children, our Leon stands out because of his blue cheeks and hands. His entire body has a purple tint. It's a result of hypoxia, low levels of oxygen in his body cells. Leon has HLHS - one of the most severe heart defects. Hypoplastic Left Heart Syndrome is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly which means that Leon has only half of his heart and no left heart chamber. There are also associated defects: mitral valve atresia (heart defect in which the mitral valve of the heart did not develop correctly) and aortic arch hypoplasia (hypoplastic aortic arch is present when there is a blockage in a certain location in the aorta).

One functioning heart chamber must handle two blood circuits: to the lungs and the systemic circulation which pumps the blood from the heart to other body parts. This puts significant pressure in little Leon’s heart. Unfortunately Leon’s heart cannot be surgically restored to its normal structure. Treatment is palliative and involves 3 open-heart cardiac surgeries performed in the first years of child’s life. Only this gives the patient a chance to live to adulthood.

When five years ago, my husband Michal and myself, found out we were pregnant with our twins, we were overjoyed. Unfortunately our delight was short lived as we were told by the doctors, in the 17th week of pregnancy, that both our unborn boys were diagnosed with the heart defects. We then decided to fight for our children, no matter what! Doctors told us that little Leon's heart was developing abnormally. Leon’s twin brother Jakub, was more fortunate - his heart defect turned out to be milder and doctors were able to fully correct it after his birth. Leon however faced a much more difficult path...

In the 7th day of his life, Leon underwent a very complicated Norwood Procedure with the Sano modification - the first stage of the palliative treatment. As a result of very serious complications during this procedure, Leon experienced a heart failure, brain haemorrhage and lymphorrhea. The internal bleeding resulted in Leon having an open chest for a week and our tiny baby was connected to a respirator for several weeks. Prognosis for Leon was very bleak. Doctors could not say what the future held for him. We sat by his bedside in the ICU unit, each taking turns for days. I would not wish for any family to go through such challenging experience which we have endured.  

During the operation, Leon’s laryngeal nerves (nerves attached to the voice box) were also damaged and he still suffers from paralysis of the vocal cords on the left side. He is able to speak but his voice is weaker than that of a healthy child.

Our son was over 3 months old when he was allowed to go home with us. It must be emphasized that only thanks to the doctors' intervention, Leon is alive and for that we are very grateful!

Unfortunately, this was not the end of our journey. After a while, we realized that Leon could not hear us. It turned out that he had a significant bilateral hearing loss. Leon received hearing aids and started his hearing rehabilitation. At the same time, we worked on his motor skills because the lengthy stay in the hospital delayed his motor development.

In the 8th month of Leon's life, we had to face once again a great challenge- Leon returned to the hospital for another operation. He underwent Glenn Fusion Procedure, second open-heart surgery to treat HLHS.  When we sent our son to the operating theatre, we went through a very difficult time, remembering the experiences from first days of Leon’s life. In the first 24 hours after his second surgery, Leon’s heart suddenly stopped and he had to be resuscitated. He fought back and after a minute and a half he begun to breathe.  According to the doctors, the incident was not to have any consequences in the future. As it turned out later, that was not the case...

After 9 days in the ICU, Leon was transferred to the ward where he spent another 6 weeks fighting lymphorrhea again. We did not return home until 2 months after the surgery.

Shortly thereafter, we noticed that hearing rehabilitation was not being successful. On the check-up visit we found out that Leon was completely deaf! There were so many risk factors involved in the treatment that it is difficult to pinpoint one single cause of hearing loss. 

We then started the fight for our son's hearing. The first cochlear implant surgery took place when my son was 18 months old, the second when he was almost 4 years old. It is such a special moment when you can hear your child say ‘mum’ or ‘dad’ for the first time. 

In the months that followed, it became clear that the second cardiac surgery was not entirely successful. One of the pulmonary anastomoses was obstructed! His heart condition began to deteriorate and he developed pulmonary hypertension. More medications were required. We waited with hope for an improvement, bearing in mind that he has to undergo one more operation to complete his treatment.

However, instead we received more devastating news... In August 2021, Leon was diagnosed with epilepsy which led to further hospital visits and yet more medications. 

Leo’s heart is getting weaker and weaker with every day and we have recently been informed by the doctors that the drug treatment is only a temporary solution and that Leon will require further surgeries to keep his heart beating. Unfortunately doctors who look after Leon in Poland have not got the necessary expertise to undertake the required operation at this moment. This is why we have started looking for help abroad. The doctors in Boston, USA, developed a specific treatment plan for Leon, that we did not receive here in Poland. Leon needs to undergo an urgent surgery to repair the obstructed pulmonary anastomosis!

This surgery will enable him, after a few months, to undergo the final stage of palliative treatment, the Fontana Procedure. This treatment is only available in the USA and we are hoping it will take place in October of this year in a hospital in Boston. The total cost of the travel to the United States and the surgery, which is so urgently needed, equate to nearly 1.5 million Polish Zloty, which is nearly 350 thousand Dollars or 300 thousand Pound Sterling. We simply do not have such funds and are looking at all avenues to help us raise the money needed. We therefore ask for your help us in our fight for Leon's life! 

We will appreciate any donations, no matter how big or small they are. 

Agnieszka and Michał Kolodziejczyk – Leon’s and Jakub’s parents