Excited to share that in October, we were able to participate in the First Annual OsteoPETrosis Symposium, held in Philadelphia. It was a great experience for my family and I believe, all that attended :) We met many other families who have been affected by this disease and were each very touched by their stories of overcoming. I hate that we have this ugly disease to deal with but I have to say, it has allowed me to meet some of the strongest people I know. Nothing is insurmountable for them. They truly, truly embellish what it means to overcome.
We had three doctors attend the patient symposium. They were there to give us an update on research, as well as answer questions from families. It was great, for once, to feel like our disease was IMPORTANT to someone, let alone an entire room of people who cared and 'got it'.
Hopefully, by the next symposium, we will have a non-profit established to provide support for families, help fund research efforts to eventually lead to a cure for ALL forms of this disease. Our form, ADO II, may be considered 'benign' and 'asymptomatic' in many publications but I promise if you sit and listen to my family's history with this asymptomatic disease, you will quickly see that unfortunately, that is not always the case.
Kaleb was a very lucky young man on September 16. He was a passenger in a vehicle that rolled. By the grace of God and a couple angels protecting him, he did not receive one broken bone. Miraculous. And now...a very, very thankful mom and dad. For a boy who fractured two vertebrae and his pelvis, unbeknownst to all of us...we're amazed that he was able to walk away (well....wheel away), with only minor injuries.
Here's to a great remainder of 2013. Sending healthy thoughts to each and every one of you.
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