Rare Disease Day

I just wanted to write a short note about today being Rare Disease Day. As you all know, one of my goals for this blog and in my life is to help raise awareness for children like Landon. I thank God everyday that Landon's disease was caught on the Newbirn Screen. We learned through further testing when I was pregnant with Emeline that Landon is the only known person in the world at this time with his DNA mutations that cause his non-cardiac version of VLCADD. 90% of the healthcare professionals he will encounter in his life time, besides his geneticist and metabolic specialists of course, will have never heard of his disease or how to even treat it. I carry a protocol letter in my car, because if something were to happen while we were out I have to have the letter so he could receive the proper treatment and care until they could reach his geneticist. This letter also explains his disease and the consequences if it were not to be followed (coma, death, etc). I must tell you the first time I read it, it was a shock to the system and made me cry. I knew all of the information already, but to see it written in front of your face with your child's name on it is a whole different story.

Please take a minute to help us spread the word and raise awareness for Mito, FOD's and VLCADD. You never know who you may be able to teach or help.