Recently in April, EB Mum and DEBRA Australia Board Member Mel used her recent holiday to Bail to also help support some of the families living in Bali impacted by EB by delivering some much needed bandages. Mel was kind enough to share her story with us:
On Tuesday 3rd April we were picked up by Yupi one of the volunteers who works with Solemen Indonesia to take us out to see two sufferers of EB and to deliver much needed bandages and cream. Early start to the morning and we headed off to a village in Karangasem at the bottom of Mount Agung. This is a very remote village that we had to access by foot once we reached the end of the road and gained access by walking about a kilometer uphill with our supplies. We were greeted by the whole family who all live in a remote village on top of the hill. We then met Yupi who is a very cheery and bubbly little man who suffers from Recessive EB. His little brother Yuki passed away in November from EB related issues.
Yupi is very small for his age and has lost his fingers and toes. He also doesn’t walk or move around without being carried. I was told they are giving him blood transfusions due to low hemoglobin and will be starting growth hormone to increase his size. Unfortunately Sarah couldn’t come with us as she was sick so we had to work with a huge language barrier unfortunately but we got through. We did our best and I showed them how to use the bandages we provided. They are currently using melonin and old handy bandages so were wrapped with what we could give them. I showed them some techniques and they seemed to get it and understand. Considering their basic living arrangements his skin looked remarkably well with no infection which totally amazed me. Nutrition would be the biggest factor and I gave them some ideas on how to get more nutrients into them such as raw eggs in milk etc. which encouraged them. I asked Yupi was he in pain and he said no and was on no painkillers but as we all know, what is pain to EB suffers.
The family were very welcoming, and I have to say his Mum and I shed a little tear. I think she was just grateful to meet another Mum who understands how she feels. Yupi had the most amazing smile and was very loving and accepting to our help and knowledge.
After some time we left there making our way back down the trek to see Wayan in Badung. Wayan is a 22 year old Recessive EB sufferer. Once again he lives in the families complex and maintains a fairly normal life. Unlike Yupi, Wayan is mobile and a remarkable man. He is also very small and thin. He has lost his hands and feet as well but somehow manages to do the most amazing drawings and makes light shades out of match sticks. He is not peg fed also but once again his skin looked ok. I showed him new bandage techniques and was very happy with the more lightweight bandages. He had a lot of neck wounds so I showed him how to use the bandages as protection as well. Once again his family was so thankful and his little brother could not get enough of us and even did a little dance for us. Beautiful grateful people all round and I am humbled that I could help in some way to make their lives better.
Solemen is a remarkable organization in Bali who help a lot of disadvantaged people over there. Remembering most of these people live in remote villages with no access to power or vehicles or even medical care. They do their best to accommodate everyone’s needs relying on donations like we do.
Thank you so much for supporting me in this venture. I cannot begin to let you know how humbling this experience was to me and how appreciated these donations were by these amazing EB sufferers.