Chris and his skin as delicate as a butterfly's wings
opatrunki, kremy i bandaże na 3 lata
Ends at: 10 November 2015
Krzyś dzięki pomocy Darczyńców ma zapewnione najlepsze opatrunki na świecie oraz leki, maści i suplementy diety. Pielęgnacja kosztuje nawet 5-6 tyś zł miesięcznie ale dzięki Wam mamy w co zawijać Krzysia, za co jesteśmy Wam ogromnie wdzięczni.
Krzyś nosi te opatrunki cały czas, nie może być nawet dnia przerwy w ich noszeniu bo skóra może się zerwać od zwykłego potarcia stopką o prześcieradło. Krzyś nigdy nie zrobił kroku boso, chodzi dzięki opatrunkom, które nie przyklejają się do ran.
Krzyś ma ciężką odmianę choroby i musi mieć pozawijane paluszki, aby nie dopuścić do przykurczów. Dzięki takiemu zabezpieczeniu, chronimy naszego synka od bólu, który pomimo tego jest bardzo radosnym dzieciątkiem. Kocha zabawy ze starszym bratem, tańczy i stara się żyć w miarę normalnie. Krzyś w maju będzie miał 3 latka.
Bądźcie nadal z nami.
It’s August. The temperature is high, the body sweats. Chris’s skin can’t stand the heat. It responds with blisters appearing all over the boy’s body, even underneath his nails, one of the nails gets separated from Chris’s toe. Unfortunately this illness is more serious than it seems to be when judging by what you can see. I would like to breastfeed Chris ‘cause I know that it would be the best for him, but blisters turning out in Chris’s mouth distract him from sucking. I have to pierce them taking care to prevent my son from chocking with his blood. There are times when Chris sleeps blissfully. After change of all the dressing, when his skin is moisturized with special cream, his face, usually filled with pain, softens a little bit. Then I take my time to breathe deeply, to calm down, to restore balance and to find strength for another fight with pain.
Three months old Chris was born on Mother’s Day giving the best gift ever to his mum. Chris’s skin was “naughty” from the very beginning. No one could guess that name band would cause so many troubles. The name band getting in touch with tiny wrist caused an awful blister which resulted with a wound… unfortunately that was just the beginning.
Right after being born, Chris was taken to The Children’s Memorial Health Institute. His mum could meet him few days later. Hands and feet covered with blood left bloody stains on the sheet. It is obvious that an infant does not understand that he hurts himself when kinking.
It is EB, such was the diagnosis stated on the Patient Alert Card. After two weeks, to his parents disbelieve, Chris was sent home. The parents had no idea what to do, how to relieve their son’s pain. Silicone brought form the hospital eased the wounds for a brief moment only, the dressing was too heavy, as a result arms and legs started to bruise due to poor blood flow.
We slowly learn how to live with EB, and even though it might sound strange, we try to rule it. Nowadays, there is no medicine, no perfect solution that could heal Chris – says the boy’s mum – With help of special bandages we are able to fight feet wounds but ambient conditions, i.e. temperature or humidity, may be a real hindrance. The pain is conditioned by the weather.
Chris is still waiting for genetic tests results. With the results we will know which EB variant does Chris have. Most of you who were so engaged in stories of Zuzia and Kajtek – both of them suffering from the most severe variant of EB disease – would like to sent Chris to Minnesota Clinique as well. It is not time for Chris yet. We are still waiting for detailed diagnosis. The genetic tests results are not known yet. We must be aware of the fact that Chris is still very young. He could not survive treatment that is intended for Zuzia or Kajtek. Each case is different. What Chris needs now is nothing more than a special dressing that does not stick to the wound, along with a cream and a bandage. One might think that bandage is not too much whereas it eases the pain indeed. Separation of layers occurs less often when the skin is protected properly. Wounds covered with special dressing heal much faster. Chris’s brother helps as much as he can. It is his voice that can soothe Chris when the parents feel like giving up.
Baby’s skin. Pink, smooth, smelling like newborn child. You take a look and want to touch it gently right away, kiss, hug … and that is exactly what a little baby needs to feel safe. The touch helps the baby to calm down. Chris does not differ from any other children when it comes to need for closeness. He would love to be hugged and touched. Unfortunately he cannot get this feeling. His delicate skin sends violent signals instantly each time he experiences either hug or touch. Chris and his family need help.
Everyday fight with pain requires lots of money. We would like to provide 3-year long funding for him. We hope that after this time it will be possible to change the treatment method. Until then the main goal is to deal with the wounds. You can help to make it easier.
Chris bank account (the funds are presented in a form of graph after being booked).
Title: 2836 Krzysztof Czupryn
BPH: 65 1060 0076 0000 3380 0013 1425
IBAN: PL SWIFT: BPHKPLPK
News 14th August 2015
Chris’s mother has received the genetic tests results. Unfortunately the EB variant Chris suffers from is severe distrophic variant. We could not get worse information therefore it is necessary to help even more.