Over the years as a Delray Beach family photographer I have met and photographed some truly sweet families. And sweet is exactly how I’d describe the Ogmans. I initially met them when their daughter Kira was born six years ago. Two years later, the Ogmans welcomed a second child, a beautiful little boy they named Jordan Avi.
Recently the Ogmans received a devastating diagnosis for their now four year old precious boy. In September of 2019 they were told that Jordan had a genetic fatal neurodegenerative disease of the brain: TECPR2. The Ogmans are now racing against the clock in order to save their son. They have found hope for a cure with prominent researchers at the University of Florida. They have so far raised enough money to send over the first payment to the University. Gene therapy is very expensive and they have a long way to go, but they are determined to raise the funds to save their son.
Please take a moment to look through the photos below, I know you will see the sweet and fun personality of this little guy and the love his parents and big sister have for him. I have attached links to Jordan’s gofundme and chesed fund fundraisers which have a lot more information on what this family is going through, as well as an opportunity to donate and help save Jordan.
The evening of our photo shoot was magical. The weather was perfect and the sunset phenomenal. I was so excited to see everyone, as it had been years. The first thing that came to mind upon meeting little Jordy, as he is affectionately called, was the song “beautiful boy” by John Lennon. Jordy’s smile is so pure and radiant. His giggles of delight over the bubbles blowing in the wind melted my heart, and his desire to copy everything his big sister did was adorable! We all had the best time during our bubble dance party, running around, playing ring around the rosy and going for a magic carpet ride. The Ogman kiddos certainly do no lack in the personality department!
With all Stacey and David are going through it was wonderful to watch and capture the immense love and pride they clearly have for their children. Hearing mom whisper to her son “Jordy you make me so happy” tugged at my heart. I pray for her to always have her Jordy to hug and hold. I feel so privileged to have been able to be a small part of Jordy’s journey.