What I found was more clinical information, published research, and sad stories about babies who weren't diagnosed with VLCADD until after they had succumbed to the disease. Most often, these deaths were attributed to SIDS. None of this is helpful to a new mom who is already worrying about everything. Klaw was 5 days old and I was holding him wondering how many more times I would have the opportunity to hold him. Dr. Proud informed me that there were other families in the area with relatively healthy VLCADD kids. However, I didn't know them and nothing I found on the internet supported her statement. Dr. Google did not do a very good job at finding information on children and adults who are living with VLCADD.
This brings me to my newest project! Since joining a fatty-acid oxidation disorder (FOD) support group & a mitochondrial disorder support group, I have found families who are living with these diseases and blogging about it as they go. The problem is that our little "family" blogs don't matter enough to Dr. Google to pop up in a search on a regular basis. I am now trying to compile a list of blogs in one location so that it might be just a little bit easier for a new Mito family to find people who have been there, done that. In the beginning, I wasn't ready to reach out to people directly but I would have loved to have been able to read about families dealing with VLCADD on a day to day basis.
Please visit my VLCADD page and visit some of the other blogs that are listed. If you know an FOD/Mito blogger, please encourage them to add their blog to the list. These disorders are more than just a clinical diagnosis, an acronym, another blood test, or an article in a peer reviewed journal. They are living, breathing children and adults.