Questions

We have had a lot of people ask us questions about Camden's dwarfism and I realize that many people have questions they want to ask, but just don't know how. I thought I would write this post to answer some of the most frequent questions we've gotten. Please know that we welcome any questions that you have, so please don't be afraid to ask. Besides we really love talking about Camden:)

*I got all of the statistics from the LPA website

What is achondroplasia?
Achondroplasia is a skeletal disorder that causes dwarfism. Camden's body does not convert cartilage into bone as efficiently and as quickly as a person of average height. Because of this, his bones (especially the long bones in his arms and legs) will be shorter than normal. Achondroplasia is the most common type of dwarfism and it occurs in 1: 26,000-40,000 births.

Is it an inherited condition?
In Camden's case it is not inherited. More than 80% of all babies born with achon come from average size parents with no family history of the condition. Camden's achon was caused by a random gene mutation at conception. He has one normal gene and one abnormal gene. He has a 50% chance of passing it on to his children.

How tall will Cam be?
We have no idea exactly how tall he will be but the average height for an adult male with achon is about 4 feet.


What can be done to treat it?
This question has been hard for me to answer because I don't view achondroplasia as a disease that needs to be treated, but instead as a condition that needs to be managed. There is no way to "fix" Cam's condition. There has been a lot of research done about growth hormone therapy, but it hasn't proven to be very effective. There are also limb-lengthening treatments and surgeries that are incredibly expensive and painful. It doesn't make sense to us to put Cam through those types of things to try to "correct" his dwarfism. We don't want him to grow up thinking that there is something wrong with him, and to me, that is what those treatments would do. He is going to be little so we don't think it's fair to put Cam through those things just to gain a few inches. We want him to be proud of who he is.
On the other hand, there are things we need to monitor closely to make sure he is safe and healthy. For example, he will have to have regular CT scans to monitor the opening at the base of his skull. In average height people, this opening is round, but in people with achon, the hole is misshapen so there is a possibility of his spine being "pinched" or cerebral-spinal fluid not passing efficiently. Cam had a CT scan a few months ago when we went to see the neurosurgeon and everything looked great. Also, kids with achon are prone to ear infections because they have shorter ear canals/nasal passages so he may have to have tubes put in eventually. He's never had an ear infection, so this may not be a problem for us. He may also end up needing physical therapy depending on his development.


Will your future kids have a chance of being born with dwarfism?
Most likely, they won't be. Since Cam's dwarfism was random, there is very little possibility of it happening again.


I think the main thing that Patrick and I want everyone to know is that Cam is a totally normal kid that just happens to be small. Achondroplasia is not a mental disability and is not a handicap. He will grow up to be anything he wants to be. He will be able to go to college, get married, have kids of his own--whatever he wants to achieve, he can. He may just need a stool every once in a while to reach things:)