We never thought that we would be forced to ask for help in the fight for our child's life, unfortunately, life writes surprising scenarios ...
Leon was born with a severe and extremely rare heart defect - Ebstein's anomaly.
Only a few babies are born each year with this syndrome, and the disease is still not fully understood. After birth Leon spent his first few weeks in the neonatal intensive care unit, connected to the equipment. He began fighting for his life, which was to be completely different. Over time, our stays in hospitals became routine, and the daily necessity to watch our son closely and check his saturation became normal.
Although Leon grew and developed like other children his age, in the first months, fear and uncertainty crept into our lives quickly - the hospital in our city referred us to a specialist centre, because here they did not know how to treat us. As a quick admission, we got to the ICZMP in Łódź. Still, like all parents, we assumed the best version of our child's health. We believed it was a heart defect that Leon would learn to live with…
Unfortunately, the disease revealed itself fairly quickly – at the beginning the attacks were rare but now Leon has more and more attacks of tachycardia (that’s where his heart beats up to 320 times a minute!). His saturation also drops, which proves, among other things, the continued weakness of the heart. Although he is trying to keep up with his older sister, we must stop him - he gets tired quickly, sweats a lot, and recently he starts to bruise.
During Leon’s last stay at hospital it became clear that the heart was deteriorating - the defect evolves, wreaking havoc on the little heart. The inevitable and natural development of the child significantly reduces the effectiveness of the right ventricle in Leon. The enlarged right atrium of the heart becomes stretched to the limit, and an improperly inserted valve increases its regurgitation.
We are very lucky to find exceptional and empathetic doctors - unfortunately, this turns out to be insufficient. Doctors do not allow us to make far-reaching plans ... Due to the fact that Leon's defect is extremely rare - we do not find adequate relief in the country. Our world collapsed at first – we did not expect it to be like that ...
We are seeking help from everywhere. Surgery in the United States at UPMC Children's Hospital of Pittsburgh turns out to be a chance for Leon's life. It is a centre that specializes in cone arthroplasty and is visited by patients from all over the world.
Our hope was revived when we qualified for surgery - Professor Jose Da Silva will undertake the impossible! We have a real chance to save Leon's life - we hold on to this hope as a lifeline.
Doctors in the United States set the surgery date for March 2021 ...
The biggest obstacle is money - the cost of the surgery, the subsequent stay in the ICU, the flight to the United States by medical transport is simply enormous.
Although our child's life is priceless to us, it has been valued at an enormous amount. For us, these costs are unimaginable and unattainable.
We need your help! We know very well how tough this mission will be and this pandemic is not in our favour. We have no other choice - it is about Leon's life and as parents, we will do everything we can to save his heart. We are asking you for your support - every penny is of great importance to us, every support is worth its weight in gold, and each donation is a greater chance!
We are begging you for help!