After my daughter was diagnosed with a rare genetic disorder (2q23.1 microdeletion syndrome), her geneticist recommended I look for a medical student that needed a “topic” to research for their doctorate program because there were no treatments, information or support available for her syndrome. We have been inspired to organize Aware of Angels to do just this but, not just for her. At that time she was 1 in 100 cases reported worldwide (this year with new medical technology and reporting, cases are closer to 300). Her doctor then referred us to family blogs and face book for information and some support on her rare syndrome-that is all he had available. Many families have shared with me that they are going through the same situation as we are. The idea with Aware of Angels is to feature as many of these children as possible through an online submission, where their stories and images are shared. Using the Aware of Angels Photography Project as a global awareness platform to share this information. We believe that awareness will equal research, there is power in numbers! With these Angels we will reach the medical field and the general population to cause interest and awareness in these children, their disorders and in genetics. We want families to be able to connect-to help each other with their experiences and knowledge because we know how important those connections are. We want to share this information with doctors and researchers to better achieve results. It took us 5 long years to get a diagnosis for our Angel, and because of that experience we want to do all we can to advocate for others living in the unknown.
My daughter isn’t the first in my immediate family that has had a genetic disorder. I have several family members that have a suspected genetic disorder that has gone undiagnosed. One of those is my little brother (In Loving Memory) who went undiagnosed with a genetic disorder that he was born with. When he was born, doctors sent him home with my parents and told them he wouldn’t make it. For him there was no support, treatments or information available. That was over 35 years ago and currently not a lot has changed…it’s time for more awareness. With my Mother’s diligence, my brother survived to the age of 18 years, cause of illness and death is unknown. Someone will discover new treatments, improve genetic testing and diagnose those who are still looking for answers.
These children are so special and unique with beautiful personalities and attitudes, they are truly Angels and deserve as much recognition as they can get. With the hundreds of families I have come in contact with over the last couple of years, I have become so concerned at the lack of information available to them. There is a lack of resources available from doctors and teachers, and wrong information is being given to families about their children’s diagnosis. Children are being temporarily treated and not enough research is being done for their future health or the future of others. I feel very passionate about making people aware of these Angels.
Some parents may be hesitant to put their child “out there”. To list their Angels on blogs, websites, articles, face book and research, but how will others know about them and their experience if we don’t raise the awareness. So, my beautiful baby girl is “out there”, she’s on here to make a difference. I am sharing her with the world, in and on as many outlets as I can find, so the world can change for her and others to follow.