What is Osteopetrosis?

Little did I know growing up the effect that bones would have on my life. I knew our family broke bones but I didn't understand any more than that. Our family did not realize or appreciate the impact this inconvenience would end up having on generations to come. We always put a cast on, the bone healed and off again we went. And then I learned the name, OsteoPETrosis and began to realize, I was very thankful for my ignorance. The ugliness of this disease has been made clear throughout my son, Kaleb's, life. Since 4 months of age, the disease started to show it's signs in my son but due to the lack of knowledge both on my part and on the doctors part, we did not realize we were being shown signs of such a DEVASTATING disease. One of the best terms I've seen used to describe this disease is OsteoATROCIOUS. It truly is atrocious.

For a disease that is considered benign, I have lived through it's many complications from the eyes of a mother, daughter, sister, granddaughter, niece, and cousin. It has driven me to spend endless hours researching on the internet. Looking for the answer to this disease. Wondering if a cure will be found in my life or if research will provide the medical advancements necessary to get Kaleb up walking again. I cannot begin to describe the pain that our family has experienced due to this benign disease. We have spent hours listening to a child scream out in pain because the pain in his 'hip' felt like a stabbing knife. Words do not portray the picture properly. The scars are visible and real BUT the emotional scars are well hidden. This disease itself could be considered a hidden disease. From the outside, to look at a patient with Osteopetrosis, there are no visible signs. Patients look like normal, healthy individuals because the problems are occurring down deep in the skeletons.

We realize we have no choice but to continue to fight and look for the answers we and so many other families so desperately need. But as a mother, watching this disease, I have to say, it is a heart wrenching, relentless disease. It shows no mercy. It cripples, incapacitates, causes blindness, deafness, severe bone pain (compared by doctors as intense as bone cancer pain). This disease has impacted our minds, our sense of hope and our 'dream' for the normal family. I can say that because of OsteoPETrosis, my life is a much different life than I once imagined.

This disease is very rare and therefore, does not warrant the attention as other 'serious' diseases such as cancer or diabetes or AIDs. But the effects of this disease, one that attacks the skeletons, the eyes, the ears, the liver, the spleen and many others areas is just as real and just as painful. The dominant form of this disease may not be fatal, but it is life altering and lifelong. We realize that the problems we currently have that seem hard to carry, may only be the tip of what we may be forced to deal with in the future. Sounds a little depressing, doesn't it?? That is why the creation of the International Osteopetrosis Association is so important to OUR family, Mark, Lori and Kaleb Davis. We are just one of many families that the research provided by this groups funding will directly impact and we are very thankful for that.

We were very honored to be invited to the 1st Annual Halloween Gala to support the International Osteopetrosis Association. This association is a sign of hope for the families afflicted by this disease and the money raised will be used for research of osteopetrosis. We went to put a face with this disease. When you look at Kaleb, you can see the sparkle in his eyes. He is such a joy to everyone he touches and we need to continue to fight for his healthy skeleton. We need more research on this disease, to give these kids a chance for a healthier future.