When I was engaged to my husband we went to the mall to pick up a few things (back when malls where still cool). During our time there my husband had to sit down on the bench and take a break. I was teasing him about being young and having to sit on the bench. That is where I learned that he had an extra bone in his knee that required his mussels and tendons to pop around it giving him a dead leg while he walked. I also learned that he had a genetic bone disease called hereditary multiple exostoses or heredity multiple osteochondromas. This is a genetic disease that grows extra bones throughout your body while you are growing. They can not cause a problem at all if they are small and in certain locations or they can cause all sorts of problems like loss of movement, deformities of the regular bone, they can impose upon nerves, tendons or blood vessels, interfere with normal movement or circulation which causes severe pain.

As I talked with him I learned that he had surgeries throughout his youth when the need came up. He had multiple bones removed and others left alone depending on where they were at. He said he was sick of surgeries while he was a teen and should have had the one on his knee removed but hadn’t. It was hereditary which made it a possibility that our children would have the same disease. He had gotten it from his mother who passed it down to him and two of his other siblings. Our children had a fifty fifty chance of getting the disease.

Fast forward many years later and we welcomed a bouncing baby boy! He was perfect and the calmest baby we could ask for. My mother-in-law came to visit us when he was about six months old and quickly found his first extra bone. I knew it was a possibility but learning he had it made me very sad for him. My husband and I at that point had been married for over six years. In that time we had the bone (ended up being two bones) in his knee removed and he had been rejected from joining the military because of the bones in his knees. I was learning more about this disease that he had grow up with and understood that my son would have to go through the same thing and would encounter similar set backs. Sure enough we took him to a specialist when he was 18 months and they confirmed that he did have the genetic disease.

Now, what I wasn’t prepared for was the worry and concern I constantly had for my son and this disease. I was told by the specialist that when he has loss of movement that is a cause for concern or if there is pain then that is a cause for concern. But to a mom….that leaves a world of possibilities. When he complains of pains in his legs is it a bone? Is it growing pains? You don’t want to jump to conclusions but what if you are not on top of it enough and your child’s leg becomes deformed? Same with his upper body. How bad does he have it? It varies from kid to kid on the severity of the disease and where they appear. My husbands family who had gotten it went from mild cases to severe with one cousin having over 20 surgeries in his youth. We are on a schedule to see the specialist once a year but if anything occurs to come in sooner…. this leaves it wide open and to a mothers worried mind it does not ease the concern that she might miss something.

With that being said we have been on this journey for 8 years. During those eight years we added a brother to the mix and he received the genetic disease too. I was on a flight home and he was asleep in my arms and I found his first bone at six months as well. I cried on that flight as I experienced the same sadness that I felt for his brother. I have stories to share of victories and fails with this bone disease. The pain it has caused my sons without us knowing is frustrating. Having a parent who has it helps a person who doesn’t have it know when to fight for their child. Even with that knowledge from my husband it has brought up different signs and complications in my sons.

Watching my mother raise my sister with down syndrome helped me know how to fight for my child. That I would need a tough skin as I made decisions for my boys and stuck with them. This disease is not easily seen on the outside. Sometimes it is but for the most part my boys look like everything is fine and most of the time everything is fine. I take my children to Shriners and what my sons deal with seems so minimal to what I see while I am there. No matter how minimal it seems to what others deal with it isn’t minimal to you or your child. As a parent, similar decisions have to be made for the welfare of your child and although you may think it is small it is not small. So keep fighting, we are all in this together as we do what we feel is best for our child’s health.

Rachel

** The picture below is my oldest around the time we found his first extra bone.