- spend hours in front of the computer collecting information about
- write letters to sponsors and associations
- translate these letters and the children’s clinical histories for
possible treatment abroad
- sponsor children
- are in direct contact with the children and transmit their needs to
possible sponsors and organize the treatments
- work on these web pages to reach as many people as possible and to
keep the information current and transparent
- see to it that the donations reach the children they are meant to
reach and are not lost on their way there
- bombard friends and relatives with outlandish help requests
We are all volunteers.
We do it because we want to help some children, who, on top of having
been born with a congenital disease, are so unlucky as to be in a country
without sufficient healthcare infrastructure. All were born in families
which can’t support the economical demands of the child’s illness.
Some of the children have been abandoned by their parents. Others have
other diseases besides OI.
We are not an association because we want to avoid
expenses and bureaucracy. We are flesh-and-bones people who are working to
help other flesh-and-bones people. We do it as well as we can and with all
the enthusiasm and energy we can muster.