The breath for Alan

When a mother sees her child for the first time, she does not think about how long it is going to live, she does not wonder  whether or not her child is going to live to see it’s eighteenth birthday, wedding or to see it’s own children… These thoughts would be absurd.  Alanek’s birth parents did not have these thoughts either; they did not even know that their son is ill. They left him in a hospital right after birth. This is when Alanek was lucky enough to get new parents. Who loved him and never gave him away.

Foster family that got Alan has been giving home and care to children abandoned in hospitals for the last thirteen years. When Mrs Grazynka got home with Alanek there was eight other children already waiting for him, his new brothers and sisters. Back then nobody knew that at the exactly same time in a hospital lab the test results have revealed a terrible disease. Alanek’s new family received him with joy and happiness and they did could not even predict that in a couple of weeks they will receive a phone call that they will not forget till the end of their days. When hospital called with the information that Alanek has Cystic Fibrosis they could not believe it. “I remember that when I was reading about a child suffering from Cystic Fibrosis I really felt sorry for him. At the same time I was thinking how lucky I am that all my children are healthy – says Grazynka – and we already had 30 of them. In hospital doctors explained to us in details what the disease is all about. They showed us how to make inhalations, how to pat his back. This is when I was also told that I do not have to struggle with the illness myself, that I could just put him into a care home. But he is our son! – I said – And we love him very much. He is staying with us; he is not going anywhere, no way!”

There is no cure for Cystic Fibrosis. It is not a contagious illness.  It is genetic and it is for life. You can’t see it with your bare eyes.  But it is there, constantly. The person suffering with Cystic Fibrosis has difficulties breathing because of the mucus in the bronchi. Very often the sufferer wakes up in the middle of the night, out of breath, suffocating. This is when you have to perform an inhalation, pat his back. Unfortunately the inhalations are not enough. In the long run the manual drainage of the lungs is also not enough as thick and sticky mucus that is filling the lungs is a great base for bacteria growth. Bacteria weaken the body and it has no or very little resources to fight the illness. In addition the mucus is causing hypoxia (body gets deprived of adequate oxygen supply). There is no need to mention what the worst outcome of hypoxia is.

Considering the current state of medical care in Poland those who live with Cystic Fibrosis are looking at around 25 years of bearable life. To compare: in western countries sufferers are looking at even 45 years! It is mainly due to higher standards of care and easier access to tests and specialist medical equipment or medication. Western medicine also offers lung transplants more often.

There is a long and pricey treatment ahead of Alanek. As long as he lives he has to fight. Every day with no break, no holiday. Alanek is and will be treated and rehabilitated, now he has someone to live for – his new loving family. Alanek is developing correctly, just as other kids his age, despite the illness and the side effects. At this present moment the illness caused him stomach problems and that resulted in having to be fed by a tube, directly into his stomach. In order to function properly he also needs to use help of professional rehabilitant. He, through specialist exercises, will help Alan to evacuate the mucus more effectively. This kind of treatment is not funded by NFZ (National Fund for Health).

Our aim is to raise money for a year of this therapy. Who knows, maybe thanks to your help Alan will live to see his 18th…..30th … or even 45th birthday. Maybe he will become someone famous, like Fryderyk Chopin who probably also suffered from Cystic Fibrosis. Maybe he will become a doctor – he already knows so much about hospitals and diseases. Maybe he will just be an ordinary but good person. His life is in our hands.