My grandson, Gunner Albitre, was invited to speak at a conference for OI ( Osteogenesis Imperfecta) – commonly referred to as Brittle Bone Disease on the campus of UCLA. I had the privilege of attending this event with Gunner and his parents. There were many different doctors, from different specialties, at this conference – as well as many people of various ages in attendance.
It is a very informative meeting, with lots of information regarding this disease. Gunner has been diagnosed with Type 1 OI, which is the most mild kind. With that being said, he has broken or fractured 15 bones before his 12th birthday. They had a nice write-up on Gunner for the program.
At this event, Gunner was featured to speak at Center Stage, and to field some questions from the audience. Gunner gave his speech with confidence and poise – I am so proud of this kid – he is absolutely amazing.
Also, there was a girl from Bakersfield there, Zoe, who is 3 years old. She has been diagnosed with Type 3 OI, a much more severe form of OI. Here is a picture of Gunner and Zoe.
There was a lot of good information given at this event – from the “experts” – as well as from people that have lived with this disease for more than 50 years. One of the main contributors to OI are irregularities with Collagen in the body – with no known cure. In fact, the number of doctors that are not even aware of the disease is astounding. There are approximately 20,000 people in the United States diagnosed with the various types of OI. Therefore, the research has simply not been there – and the funding for research also is not there.