We fear for Szymon’s life each day! Please help us see the cure…

13 August 2019

❗️No child should ever suffer like this…

Pain is sometimes unendurable - Szymon screams and arches. The attacks cause him incredible pain.  The available drugs no longer help…

The scientists are currently working to find a drug for Szymon’s disease. For our child to endure until then he must receive pain-reducing injections, andundergo rehabilitation.

Your help gives us hope that Szymon will last until then. There are still not enough funds  to complete the collection.

Please, help us to get rid of this endurable pain

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Szymon sometimes howls with pain. Spasticity contorts his body and causes inconceivable pain. His pain can be so strong, that he bites his lips and cheeks. There is no cure for his condition yet, but doctors are working on it, therefore, we have to do everything for our son to see this day come! Will you help us? 

We keep vigil next to Szymek all the time. His illness may turn for the worst at any time. Our beloved son either sleeps or, when he’s awake, suffers from pain - this is what his life mainly is like. All this has been caused by a faulty gene. NBIA1 makes iron accumulate in his brain.  The iron causes damage to Szymon’s brain and nervous system! He’s got an increasingly rigid body and lockjaw.. Our child is suffering and we are helpless. We’re awaiting the day when doctors announce a cure. But we have to last until then…

Hospital has become our second home. Since the condition manifested itself, Szymek has been bed-ridden in hospital progressively more. In the last four years he has undergone 12 surgeries. This is so many for a 13-year old boy.  The illness caused his laryngeal nerve paralysis requiring tracheostomy, so that he can breathe. It used to happen that food entered his lungs, therefore he has had a gastronomy tube (PEG) inserted.

He has more and more scars from surgeries, but none of the surgeries have stopped his pain.

Sometimes we wonder how many more misfortunes we’ll be able to cope with. We’ve recently learnt that our daughter - Szymek’s  younger sister - carries the NBIA illness. We hope that the illness will not activate itself in Helena. Unfortunately, Helena was born in the 26th week of pregnancy. She weighed only 1.4 pounds. She was so tiny, she fitted in the palm of a hand. Because of it, she’s paralised on her right hand side and has one leg shorter than the other. She also needs rehabilitation.

We know that we’re nearing the moment when the cure for Szymon is invented. We take part in tests in Munich. We must endure and use what medicine has to offer now. Injections can help reduce pain. Unfortunately, their cost is huge, and we’re struggling to cover it. We’ll soon need a ventilator and suction machine, which will extend Szymon’s life by a few years…

There are days when Szymon does not cry, but screams with pain.  We have to help him. We cannot hopelessly watch him suffer. Unfortunately, the injections, rehabilitation of Szymon and Helena and equipment cost a lot of money.  That’s why we’ve decided to tell you our story and ask you for help. There are moments in life, where there is no other way… Please help us see the day when our son is rescued...