welcome to my journal
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.
On the first day of the conference, the kids got to enjoy a day at SeaWorld with their families.
Before heading off for a day of fun at the park, Ellie put her superstar shades on 🙂
On the second day of the conference, the kids and their families went to a Gatorland Meet & Greet. There was a snake and alligator that everyone could touch and hold if they wanted to.
I can’t believe how brave this little princess was 🙂
There was a fun, family social on the second night for all of the attendees. The social had a carnival theme, which the kids loved. There were lots of carnival games, and even a balloon lady.
This little girl got some awesome balloon earrings 🙂
While their parents were listening to lots of informative speakers, the Brave Kids Club was having fun with Mother Goose.
On the last night of the conference, there was a Be Your Own Hero Banquet Dinner.
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.