When I was asked to photograph the 2013 Noonan Syndrome Foundation Conference in Orlando, I was beyond excited. I love photography, but I love it even more when it can help make a positive difference.
Noonan Syndrome (NS) is included in a larger grouping of genetically related syndromes called the RASopathies, which also includes Costello Syndrome, Neurofibromatosis Type 1 and more. NS is common and reported to occur in between 1 in 1,000 and 1 in 2,500 persons. People with NS are predisposed to cancer and may have heart abnormalities, feeding difficulties, neurological problems, short stature, chronic pain, and more.
With all these medical challenges that people with NS face, I expected to see some unhappy faces at the conference. I couldn’t have been more wrong. Over the course of the conference, I saw joyful smiles, determined and loving parents, and heard lots of giggling children. These children may face a lot of challenges, but that doesn’t stop them from living happy lives.
Throughout the week-long conference, I got to know the children and their parents. With each photograph I took, I felt an even deeper connection with them and their stories.
I think the superhero theme for the banquet dinner was fitting. Even without their superhero costumes, these amazing children will always be heroes in my eyes.
The Noonan Syndrome Foundation focuses on finding life-saving and effective medical treatments for people with Noonan Syndrome by supporting research initiatives. The foundation also raises awareness by educating the public and healthcare providers, and providing informational support services to the Noonan Syndrome community. Click here to learn more about the Noonan Syndrome Foundation. To donate, please click here.