Yeah. That's what I said, too. As a student nurse it was one of the diseases we had to study. I can even remember questions on my state boards and I don't remember much about that time as I was pregnant and vomiting with a terrible cold during the state wide testing and had to pee every ten minutes. Every time I had to barf or blow my nose or tinkle I had to raise my hand and be accompanied to the ladies room by a monitor. Yes. It was that bad. In 2000 I came face to face with Osteogenesis Imperfecta type 3 when I was asked to take a baby as a medical foster placement. A friend who was a respiratory therapist I had worked with in the past was at my house setting up the medical equipment in preparation for the placement. Besides having a disease that only about 1 in 70,000 world wide have the baby also had severe respiratory issues and a tracheostomy. The RT who worked with me as a pediatric nurse in the community sensed my nervousness and said, "this is your first trache baby isn't it?" My response was, "No, but it's the first one I ever lived with." And so 10 years later the rest is history as they say and I am very careful to mention this illustration from my life to medical students when I speak to them at USF about the entity called Osteogenesis Imperfecta. You see, no matter how compassionate, empathetic, intelligent or medical savvy you are, you will NEVER truly understand anything in this life until you've lived it. In the ten years of this difficult journey I have met some remarkable people that I would like to feature now and then. Today I'll start with Jake and his family. Jake and my boy biopsy out as the same type of OI. We first met Jake and his hilarious mom in Dallas 2004 at one of the OI national conferences. Jake was in a body cast with a cast on one arm. The spica cast is shown in the photo of my boy above. Well sort of, anyway. We had to improvise a Halloween costume after two major surgeries and a major femur fracture that broke the titanium rod in his femur thrusting it out of the broken bone into the soft tissue of his hip. The spica cast which goes from the bottom of the feet to chest is covered in mummy strips. In Dallas, as if a spica and a broken arm weren't enough, Jake broke his other arm. When his mom, crying, asked if he needed to go to the emergency room in Dallas Jake responded, "No thanks. Just give me some Advil and put me down for a nap." He was 4 years old at the time. Jake and his family were blessed with a new home through Extreme Home Makeover last year. This month, Jake is featured on a National Geographic special you can watch at this link: http://channel.nationalgeographic.com/episode/bones-4213/Overview
Treat yourself to the special and learn something new. You won't regret it.