Our mission for Milo
For the first year or so, we only told a few close family and friends any details about Milo’s situation. We didn’t want people to view him with negative preconceptions based on our early fears and challenges. We got over that, but the notion of posting something for everyone to see on the internet still didn’t feel right. We were even initially reluctant to include pictures of Milo in an academic article about his case, even though it might help others to identify similar cases.
We changed our minds after learning about the success of Matthew Might, whose blog posts about his son’s rare disorder helped connect researchers and other patients around the world, so that what was once a unique case is now one of nine. Not many, but even small numbers make it much easier for science to progress.
Traditionally, the job of reaching out to find other cases has been left to doctors. If they are at research universities or they have time, they write up descriptions of unusual cases. These descriptions appear in medical journals in precise technical language, often behind a paywall. The hope is that other doctors with similar cases will have access to these journals and time to read them.
This can be slow. Doctors are busy and can’t read everything. They may only see a child every few months or less, so they may not have all the details of the case in their heads if they do happen to read the right article.
Parents are different. We don’t have a long list of cases to think about, and we worry about our kids every day. We notice things that may not be on the doctors’ usual checklists of what to look out for. Hoping to find ways to help our children, those of us with special needs children spend hours online looking for clues to what might be going on.
By creating this website we hope to connect directly to other parents as well as doctors and researchers whose children or patients have similar issues. We are also excited to be helping Dr. Michael Bamshad and his team at University of Washington’s Center for Mendelian Genomics to develop a new platform, called MyGene2, that enables parents, clinicians, and researchers to identify related cases more rapidly through secure sharing of patient information.
How can you help?
If your child, or patient or know someone who may have similar symptoms as Milo, please contact us. You can also help through social media by tweeting to your followers, liking us on Facebook, or word of mouth.