Alvin from Huene Island on the Tulun Atoll was diagnosed with Epidermolysis Bullosa by a doctor from Bougainville in 2010.
Epidermolysis bullosa (EB) is an inherited connective tissue disease causing blisters in the skin and mucosal membranes, with an incidence of 1/50,000. Its severity ranges from mild to lethal. It is caused by a mutation in the keratin or collagen gene. As a result, the skin is extremely fragile. Minor mechanical friction or trauma will separate the layers of the skin and form blisters. (source: Wikipedia)
With help from Mark Wolfsbauer I collected 532.50 USD for Alvin and his family in 2010. Victoria Degerman, who lived on nearby Bougainville, helped Alvin and his parents organize the boat trip from Tulun to Buka and took care of the family while they stayed in the hospital. Her friend Kimai, a CEO on local level government, funded the petrol for the banana boat that picked them up. The collected money were used for new bandages, medicine and food. Living conditions on the Tulun Atoll makes treating Alvin extremely difficult. They have no electricity, running water or sterile rooms and ants have started eating the plaster from Alvin’s wounds (the reason his parents build a new hut for him on the beach front). I will try to find other ways to make life a little sweeter for Alvin. Any suggestions or help is welcomed.
Thank you to all the people who contributed!
