Child with BOS Featured in Beyond the Diagnosis Exhibit
One Sunday morning, Chad and I came across the Sunday Morning Show. They were showing a portrait of a child with a Rare Disease. It was truly amazing to hear the families speak about their child and the artist’s deep passion for what he was doing. They explained the artists do this for free through a project called Beyond the Diagnosis. The project is funded through Rare Disease United.
I immediately got on my phone to google more information. I found the links and told Chad I was going to register Talynn. I completed the application and sent in five different photos. A few hours later, I received a phone call from Patricia Weltin from Rare Disease United informing me Talynn had been picked to be the face of Bohring-Opitz Syndrome.
Patricia explained they rely on public donations and their professional artists donate their time to create these beautiful images. The portraits travel all over the world to raise awareness for rare disease. The portraits I had seen online were AMAZING and all of the artists are extremely talented. I was amazed at all the hard work she and many others had put in for the rare disease community.
This week, Patricia sent me a message saying Talynn's painting was complete! I was so excited and couldn't wait to see it. When she posted the picture, I was in awe and have been ever since. It is beautiful. I cannot wait to get our high-resolution image and see the original portrait in person.
Talynn's portrait was painted by Marie Wolfington-Jones. We are beyond blessed that Talynn was picked and in amazement at how great of a job the artist did.
~ Taylor Gurganus, BOS Foundation, Inc. Vice Chair & Co-Founder
The Beyond the Diagnosis Art Exhibit is traveling to medical schools, research institutes, and hospitals around the globe encouraging the medical community to look "beyond the diagnosis" to the patient. The BOS Foundation is very thankful for Rare Disease United supporting and bringing awareness to rare diseases. To learn more about Rare Disease United, check out their website here.