The Support Scheme...How YOU are making a difference!
Peter is six years old. He lives with his Mama and his Babushka (Grandma) in a small town in Belarus. Peter is known locally as 'The butterfly boy', due to his condition creating a butterfly-like shaped mask across his face. His photo adorns the top of this page. He is a beautiful young boy.
Peter's suffers from EB - Epidermolysis Bullosa - this is a group of genetic disorders that result in fragility of the skin and, in some cases, other internal membranes and organs. Blisters, open wounds and sores form as a result of the slightest touch, rub or trauma. Certain types of EB can be fatal in infancy and others are severely life-limiting. We estimate that there more than 5,000 people with EB in the UK, and 500,000 worldwide. Peter is one of those youngsters that has this devastating condition. His body has to be bathed, covered in special emollients (which are only available for outside Belarus) and wrapped in bandages to protect him from acquiring any further new blisters. He is currently (April 2014) in hospital as his kidneys are not functioning very well, all connected to his EB. Bandages aren't readily available in Belarus either, so Mama has to wash them, hang them on the washing line and put them back on him.....not something we would see happening in this century, is it? We visited Peter in hospital during April 2014 visit to Belarus, and he was very chirpy, all things considered. He has been learning English, and as we left the hospital and said goodbye, he replied, in English; 'Goodbye, my friends'.... as you can imagine, that was quite heartbreaking....
He had two operations on his hands, in Germany, to release the webbed effect that EB has caused. This enabled him to eat independently, an important thing for a growing boy; a little independence! Peter's family are sponsored by a family living in the UK. The money this fantastic family donate goes towards helping them source appropriate medicines and creams, and travel costs associated with so many hospital visits, without their support, things would be very hard for this family. Support from the UK makes such a great and positive difference in situations like this where medicines and bandages are not available in Belarus.
There is currently no cure for EB, we just hope and pray, every day, that peter continues to battle this condition, and maintain his beautiful disposition.
It is with great sadness that we have to tell you, Peter passed away on 31st May 2014, his little ravaged body could no longer cope with the demands of EB
Rest in peace, Petya
Nina, Anya & Anfisa
Anya is a young woman who was born with severe learning difficulties. She requires round the clock care due to her complex needs, which include severe epilepsy. Her mama; Nina, looks after her in a very dedicated way and ensures her life is as comfortable as it can be. Nina also has another daughter; Anfisa, who is 9 years old. Nina is a fantastic musician and encourages Anfisa to sing along whilst she plays piano. We are often entertained when we visit this lovely family. Nina has been alone with the girls for many years now, and has little physical help. It's hard to get long term care help for Anya as she is now so strong. Nina relies heavily on Anfisa to assist with Anya, and also around the home. Anya is often hospitalised with her epilepsy and Nina relies on the support scheme to help her with the costs of medication for Anya.
The Belarus Fund have covered the costs of a two week summer camp in Mogilev for Anfisa this August, so that she can have a break from being a fantastic help to her Mama and sister, and just be a child for a while.
Igor the artist
We met Igor for the first time in April 2014 at the side of the park in Borisov where he was quietly creating a pastel drawing of a young girl. We photographed this process, mainly to capture the concentration and sheer delight on Igors face as he created a masterpiece.
We were invited to go to his house and chat with him, find out more about him, and we discovered that he lived with his sister in law, in a tiny room, filled with oil paintings and brushes and cloths....a real artists den!
Igor is 75 years old and has lived a very varied life. He ended up working in St Petersburg, where he was assaulted on the street and damaged his hip. This wasn't treated and he is now crippled and walks using crutches. He drags his feet along, both at the same time, to get himself to the bench where he sits sketching portraits on sunny days. This is how he makes his living.
Igor is a very talented artist, possibly quite controversial at times, as some of his paintings he showed us at home were of himself surrounded by depictions of political ongoings... a very handsome, strong man featured in many of his paintings; himself.
Igor will begin to be supported by The Belarus Fund, initially short term, while we see what his needs are. he can make a small living from his sketches by the roadside, but this is weather dependant, which means his ability to eat and look after himself is limited.
He was a very interesting man, one we could sit for hours and talk about all manner of subjects. We hope to keep you posted about Igor after our next visit.
As is often the case with our elderly scheme members, we often have to report sad news. It is with deep sadness that we must inform you that Igor passed away late 2014. He was an eccentric character, bursting with many tall stories that we just didn't get to hear. RIP Igor.
Vera & Vasily and their huge family!
Vera and Vasily are parents to around 12 children....at the moment, and their brood has probably reached figures up to 40 over the years that they fostered children.
This couple have love and kindness written all over their faces, they're welcoming and ooze warmth and friendliness. This family have been on our support scheme for a while now, The Belarus Fund chose to support this family to help them achieve enough space within their home to welcome more children, getting them out of institutions. The children that they foster come from local orphanages and Vera and Vasily don't restrict this to healthy children, they have fostered lots of children with difficulties along the way.
The couple were awarded the coveted new title of 'Best family type childrens home in 2013' from the Belarusian government for their services to children. You can feel the love when you wlak in to this home, and it is a family home, not just a house filled with children. Their biological children are very much an integral part of thi home too, they visit regularly and all join in with family sing songs areound the piano. All the children than come to Vera & Vasily's are taught to sing along, and also to play an instrument. Music binds this family together, completely, and it is an absolute joy to listen to the children sing!
Donors from the South of England have regular fundraising events to support this family and are now sponsoring the development of an extension at the home, which will become a community gym. This project is ongoing and currently has walls, a roof and staircase up to it.... watch this space for further developments!
This home is a very happy home, and one that we love to visit!
We met a few new families needing short term support during our April 2014 visit, if you would be interested in hearing their stories and potentially sponsoring a family, please get in touch, we would love to hear from you.
If you, or a group of you, would like to support someone in Belarus as part of this scheme, then please contact Alan Bridgewater.
Registered Charity No: 1116762
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