Please Help! Poor Girl in Pain Every Second of Her Life and Needs Special Therapy

This will be a very unusual post. I have never used Profy as a platform for anything but technology news or internet-related commentary. But after I learned the story of 8 year old Lisa from a village near Samara in Russia I realized that if this blog can’t be used freely to help this girl at least a tiny bit, no technology in this world is truly worth anything at all. So now I am asking anyone who is willing to listen for help.

Lisa was born with a rare genetic disease – epidermolysis bullosa. This is the disease that makes all skin of a human so fragile that the softest touch will cause pain and blisters. Now try to imagine a child who can’t rub her eyes when sleepy or hug her mother because all such simple actions will cause unbearable pain. Pretty much everything that we do without thinking will be impossible for the suffering child. If you want to see something truly scary, click here for the image but please be prepared that you will probably spend at least one sleepless night after seeing this.

Lisa’s father left the family when she was two because he could not watch the child in this terrifying condition. Luckily, Lisa’s mother later remarried and even gave birth to a daughter who is now two and is Lisa’s best friend. The man is now the only one with an income in the family but unfortunately the therapy Lisa needs to survive every day of her painful life is too expensive to afford for this family.

The worst part in the entire situation is that this disease is so unfamiliar to Russian medicine that doctors here basically know nothing about how she should be treated. The stats is that there are only 100 children with this condition in the entire country so the drugs needed for such patients are not even included in the list of vital medicines that are provided to them free of charge.

So the family buys endless miles of bandages and kilograms of ointments needed to dress the girl twice a day – Lisa’s mother spends an hour every morning and an hour every evening to bandage the girl. And all of that only for her to suffer in a similar manner every day without any chance of improving the situation because it is only supporting therapy!

But it now turns out that the situation is totally different abroad – over there the disease is cured to the state where children (while not totally healthy) at least don’t suffer that much and learn to smile. And smiling is something that Lisa virtually never does. Now Lisa’s mother and Russian volunteers have found a clinic in Germany that will carry out proper therapy for the girl. Right now a charity foundation in Russia is raising money for the treatment (at least 30k euro is needed which is unrealistic for the family that has already sold their apartment to buy drugs).

After a story about the girl aired yesterday on a popular national TV show, numerous people in Russia offer their donations trying to help the little girl who’s never felt really well throughout her short life. After watching it I myself thought that this story can’t be limited by national borders only because sympathy should be international. So I have decided to use my position as author of this blog who has so many friends in the technology community worldwide to try and raise money for Lisa’s treatment in the German clinic and afterwards when she will need the drugs and special bandages that are unheard of in Russia.

If you are willing to help with a donation of your own – even a tiny one will certainly help! – you will have endless gratitude from me personally, from volunteers in Russia, from Lisa’s mother and – obviously – from this poor girl as well. Unfortunately the foundation that is now raising money for Lisa is not very friendly to international donations so I have decided to use the corporate PayPal account that I have (I have frequently mentioned here that Russian users of PayPal cannot receive money – their accounts are send-only) to raise money. Everything that I manage to raise I will transfer to Lisa’s mother or to the foundation that will pay for Lisa’s treatment in Germany depending on where the money is needed more at this or that moment of her life.

I am in no way related to Lisa or her family – I just could not help buy cry when I saw her story on TV and I thought that if I can help, I should try to do so. My role is basically that of a middleman – someone who has the luxury of a corporate PayPal account in the US and ability to get the money to Russia via the PayPal debit card.

Since everyone has seen situations where charitable causes were used by frauds of all kinds, I have to say here that unfortunately there’s nothing that I can offer you to prove my intentions of only helping Lisa and not keeping any of the money raised to myself – only my word. This is exactly why I am asking for help here from the people who have seen me writing this blog for more than 4 years now without engaging in fraudulent activities of any kind, who I talk to on Twitter and Facebook daily and who will hopefully share my feelings now.

I am not asking for you to trust me because I don’t have anything I could use to persuade people, I only ask for help if you already know and trust me – and are willing to help Lisa. If you do, please send whatever amount you feel appropriate by PayPal to helplisa@profy.com. I promise that all the donations will be accumulated and forwarded to the people who try to help cure Lisa. I will be endlessly grateful to everyone who chooses to help the poor girl with your donations and I will know that technology can actually be a useful platform for so many good things if Lisa actually gets any better!

P.S. If you’d rather donate your money to the foundation helping Lisa in Russia directly, I have included below the instructions with screenshots for you to be able to navigate the Russian-language payment processing system that they use – unfortunately the only payment option that you will be able to use there is your VISA or MasterCard card but this will probably do. Please note that this is a reputable payment processor with a proven track record of not stealing one’s credentials so you should not be worried about it.

Use this link to get to the page:

The text reads:

Our editorial office received a letter from a mother who has lost her hope and faith. Her 8 year old daughter has a very rare genetic disease – she is a so-called ‘butterfly child’ (there’s only about 100 people in this condition in Russia). Her skin is hurt by everything – folds and seams on clothes, any touch – resulting in hard to cure blisters. She needs special treatment, underwear, ointments – costing more than $7 thousand annually for supporting therapy only. Critically ill people in Russia are entitled to obtaining vital medicines free of charge. But Lisa is entitled to nothing simply because the medicines that help are not included in some special lists. Had her local doctors appealed to the ministry, the problem could have been solved at least partly. But for some reasons they don’t rush to do so. Various committees have been working on it for a year and a half now. But Lisa and her mother get nothing but promises from everyone.

The page then lists the payment details for Lisa’s mother in a Russian bank – no use for international payments. On this page please click the large green button in the bottom(it says СДЕЛАТЬ ПОЖЕРТВОВАНИЕ – DONATE)  – it is intended to make a donation using various electronic money providers or debit/credit card (VISA and MasterCard are accepted).

In the right-hand list please select the 5^th item (Банковской картой – Bank card):

After the selection the field on the left will change to reflect that you have decided to pay with a bank card and will allow you to enter the amount in rubles that you are willing to donate. Please note that $1 is about 30 rubles and here you can quickly check current exchange rate on Google (simply replace 10 with any amount that you want to donate and you will see the amount in rubles that you should type in this field):

Enter your email (it will be used to send you payment confirmation) in the field Ваш E-mail (Your Email) and click the green button saying Продолжить (Continue).

On the next screen enter your card details in the same fashion that you normally do (number, validity, card holder, CVV2/CVC2) and click the green button saying Оплатить (Pay now):

Wait for your payment to be processed without refreshing your browser page or clicking the Back button and expect the confirmation email to land in your inbox. That’s it. Thank you very much from Lisa!

UPDATE: I would like to thank everyone who has chosen to help after reading about Lisa here and elsewhere. Together we have managed to help her get some great treatment in Germany and she now feels significantly better. This does not mean that she does not need any more help – she definitely does because she needs special treatment for every day of her life, but she does feel better now. So this is just a simple thank you to everyone who has helped with whatever amount you could!