This message is from Boris the Hero who just like any other hero has his own Deadly Enemy. It is an incurable genetic disease called Metachromatic Leukodystrophy (MLD). It is a rare disease which belongs to the group of lysosomal storage diseases (the video explaining the mechanism of MLD you will find here).
As a result of an error in one of the genes, the body of a sick child does not produce a specific enzyme (arylsulfatase A - ARSA), which causes an excessive accumulation of a non-removable lipid called sulfatase. After a few years when it accumulates in the brain, the child experiences gradual disappearance of some of the functions of the organism − in general starts to lose development skills. At first there is a problem with motor skills, then the speech fades, the child loses the ability to hear, see, eat, breath, which all leads to death.
The disease is incurable − at the moment there is simply no cure. Currently, there some Clinical Trials are running all over the World (Hong Kong, Milan, Paris), the results are promising, but for the moment these procedures are not accessible for all.
However, the most common treatment of MLD is bone marrow or stem cell transplant (more about this procedure you will learn here).
Thanks to the knowledge and courage of the doctors from Transplant Clinic of Wroclaw, on 22nd of September, 2015 Borys had his stem cell transplant, one of the first procedure in this type of disease in Poland. So, to sum up, we’re still fighting! (more about our (not)everyday adventures you will learn here).
Why do we call him Boris the Hero? Because Boris is a real Hero who every day fights bravely with his deadly enemy. He does not give up and does not lose hope. His heroism infects others and motivates them to keep on fighting. But at the same time he is a naughty scamp who has normal problems, such as whether Mary still likes him, whether Michael will return quickly after being sick or if the snow will be good for making snowman or what if St. Nicholas brings him gifts for girls. And well, real heroes always win their battles, and Boris is also a hero and he’ll win, won’t he?
If you want to help Boris and join to his Hero Team you can do it by making the donation on the bank account of Children Foundation.
Below you will find the details needed for the bank transfer:
Recipient: Fundacja Dzieciom "Zdążyć z Pomocą"
Transfer title: 25421 Grybek Borys - darowizna na pomoc i ochronę zdrowia
Kod SWIFT (BIC): ALBPPLPW
PL 90 2490 0005 0000 4530 9858 4994
(donations in USD)
PL 82 2490 0005 0000 4600 7337 4309
(donations in EUR)