SAYURI-butterfly that touched me

Sayuri Ram is diagnosed with Epidermolysis Bullosa. She is 3 years old. Epidermolysis Bullosa (EB) is a very rare genetic skin disorder which causes the layers of the skin to separate causing painful blisters and at times tear off completely even with the slightest of trauma. EB is caused due to lack of certain proteins which hold the different layers of skin together. Depending upon which type of protein is missing there are various forms of EB. As a result of the blisters, the skin tears off giving way to wounds which can be prone to infections. There is currently no cure for this condition and many researchers are working across the globe to try and find a cure for this extremely painful and life altering disorder. The only way to deal with EB is to do protective bandaging and taking care of existing wounds and hoping not to get infected. They are currently using a special foam bandage which does not stick to the open wounds and is less painful while changing it. It has to be changed everyday to avoid risk of getting infected. This takes them 2-3hours at times. It also protects the parts of the skin which are not wounded. These foam dressings(mepilex lite) come in different sizes, however the ones they prefer is the largest sheet which they can cut as per their needs. It's dimensions are 20cm * 50cm and is priced at 3520 inr ($70 AUD) per sheet. They go through about 40-45 sheets per month on average. They are currently enrolled for a trial program in Kogarah (Sydney,NSW) which is sponsored by an American company... It is an open label multi-centre extension study to evaluate a cream which is supposed to heal wounds faster and its safety in EB patients. The sponsor takes care of the doctors fee and consultation charges and also for the creams that are provided. For this trial they need to travel once every 3 months from India to Australia. This is not only causing Sayuri's parents mental stress but they are financially strained too. They come from a  low economic background in Kolkata and are trying to give their best shot to give Sayuri a better quality of life. As she requires so much attention, both parents cannot work either and are dependent on extended family and help from friends. We would request you to dig deep and help this family in their crucial times. We want to be able to buy them bandage supplies once every 3 months upon their visit to Sydney. If you need more photos or personally want to get more details please email us at the following: South Sydney Indian Association [email redacted].au Also check the following:  https://www.facebook.com/butterflysayuri http://www.debra.org.au/ PS: Anyone not comfortable in donating money, can also donate the medical bandages. Please contact us via email to organise the same.