Julian 

Julian’s mom:

Julian has a very rare chromosomal abnormality, a 6q 14.1-16.1 deletion. And that meant we felt we were on our own. There was no info. We had questions like: “Will he talk, will he walk, can he go to school, will he live at all?" And the only answer the doctors gave us was, "We don't know."
Fortunately, on Facebook we found a large group of other parents of children with an abnormality on chromosome 6, all just a little different and all very rare, from all over the world. There were even a few who were missing the exact same piece as Julian. And the best thing of all was that there was a mother who persuaded a doctor to do research within this group, and so the 'Chromosome 6 Project' of the UMCG was born, with very committed employees. Only the biggest problem was and still is funding. There is hardly any money available for research into rare disorders.
Together with 2 other mothers, we founded the 'Chromosome 6 Foundation', which currently focuses on raising donations for the 'Chromosome 6 Project'.
Much has already been done in terms of research and the ultimate goal is to launch an interactive online prediction tool for chromosome 6 abnormalities on the Internet, giving parents and doctors information about what to expect in the child now and in the future. And this tool can then even be used for any other chromosome! So that in the future parents will have answers to their questions.
The project works as much as possible with volunteers, but money is needed to achieve this goal. And every contribution, however small, is very welcome. Because many small steps will eventually become big steps!