"It must suck to be in that chair"

The title of this blog is "Living with Osteopetrosis" so I thought it was only fair to share all aspects of this disease. The thing about Osteopetrosis is that the patients 'look' normal. Normally, you cannot distinguish between an OP patient and a non-OP patient. Go to www.internationalosteopetrosisassociation.org to see 3 boys on the page, and try to pick the 2 that suffer from OP. It's a hard thing to do. With Kaleb, it's different because we have this bright red chair that goes along with us and makes many people STARE like they've never seen a chair before.

Kaleb is on Christmas break so yesterday my mother and I took him to the Newark square and went into many of the little shops. We haven't done that for a long time and thought it would be nice to 'get the stink blown off him' as my mom would say :) We went into a couple shops that we couldn't get any further than the front door so we smiled and left. It's amazing to discover the non-handicap accessible places and normally you wouldn't even think about it, if it weren't for that darn chair :)

We end up sitting down for lunch and a little boy (about 5) comes up to our table. He is staring at Kaleb's chair and he loudly states, "It must SUCK to be in that chair". It embarrassed Kaleb and he put his hood up on his head (as though that would make him disappear). I promptly say "well...at times I'm sure it does..BUT there are good things too...like when we go to the mall and I'm tired of walking, Kaleb is still rearing to go". This makes the little boy laugh and he then tells us that he would just LOVE to do wheelies in Kaleb's chair. This makes Kaleb giggle a little and finally his hood comes down. He and the boy talk a little and we go on and have our dinner.

I wasn't upset at all at this boy's revelation but was glad he left feeling like Kaleb wasn't living a life that sucked.

After 2 years of dealing with the chair, we are more 'accustomed' and it has 'become part of our lives'. But there are still stark reminders that the chair is noticed and it does cause some thinking outside the box. For example, how many parents would like to go to their son's Christmas program and never be able to see his face during the performance (actually, never see him) because they put the elves in the front row standing and dancing. And you know the sad thing, is I don't think one other person in that auditorium noticed other than me, my mom and Mark. Everyone else was happily smiling proud smiles watching their children dance, twirl and run across the stage. Oblivious.

This is just one example of 'living with osteopetrosis'. This doesn't mention the excruiating bone pain that is hard to relate to unless you've seen it in full action. That will be another post, another day.

Until then, we're going to Dresden today to pass out business cards and hope that we are able to make it through the aisles successfully.

Blessings to all.
Lori
www.loridaviswebsolutions.com

Positive Osteopetrosis stories

Merry Christmas to everyone and many blessings for 2008.

I wanted to share some sites that I've found recently regarding Osteopetrosis patients. First, I found of a woman in California who overcame her struggles with OP and started Laura Burch Artworks - http://laurelburch.com/index.html. She created beautiful products that were very vivid in color and design. Unfortunately, Laura passed away in September 07 but her memory will definitely live on through the products she has created. The About Us page indicates she left her tumultuous home at the age of 14 with a paper bag of clothes and Osteopetrosis. I cannot imagine :(

Also, I found a brief article on a 13 year old boy that is now blind due to OP and he has 2 pieces of artwork in a show in October 2007. The article does not show his pieces of work and I quickly searched for more info but didn't find yet. Take a look at http://www.ocregister.com/ocregister/healthfitness/article_1889520.php for more info.

I just wanted to share these stories b/c they have been very uplifting to me. I don't know any details about either of these 2 people but I think it's great they were successful in overcoming the many obstacles OP brings.

Blessings to each of you.

Lori

Christmas Day is coming!

We're all preparing for the upcoming holidays and the hustle and bustle is in full swing. I ask that this Christmastime, you take time to remember those less fortunate or enduring the fight of their life.

Once upon a time, back in 1995, I was still a naive 23 year old believing that I would have my baby boy in a few months, and life would be grand. We were very anxious and eager to celebrate his entrance into this world. Little did I know what the next 10 years would be like, the procedures, the doctors, the tears, and the struggle.

Due to our experiences, we have had the 'awesome', yet heart wrenching opportunity to meeting many, many families who have suffered from "osteoPETrosis" - both the recessive and dominant forms. We have lost many little heros to this disease and to this day, we're watching others fight this same fight. I ask that you lift up each little soul that suffers from all forms of Osteopetrosis. Below are links to the current troopers and their situations. Please leave a post on their guestbooks and let their families know they are NOT alone. Even though it is a rare disease, it is one that greatly affects many lives.

Blessings to each of you as you celebrate Jesus' birth.

www.caringbridge.com/visit/babygavinw - Team Gavin - underwent BMT on 12/20
http://www.caringbridge.org/visit/tigerlilly - TigerLilly - underwent 2nd BMT on 8/31/07

I also ask that you keep Nate's family in your prayers. Nate lost his battle 9/22/06. He is truly an angel, as you will see on his page. His family welcomed in Hans on 8/30/07. When I opened my Christmas boxes this season to bring out my ornaments, I saw the angel that Elly created in memory of Nate and the tears flowed. Rest in peace, sweet Nate. http://www.caringbridge.org/fl/nate/

There are so many others that are fighting now or are serving as angels. A prayer from each of us may make all the difference in the world.

Many blessings to each of you during this Christmas season.
--Lori

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.