Having a positive outlook on life while living with or caring for someone with a rare disease is the best way to live. Having hope for the future and knowing that living a happy life is what is most important. Of course there are days where I’m sure many hit a bump in the road or times might not be completely happy. But those bumps make us stronger and we move forward trying to live without fear or negativity, as best we can.
Having Evan has opened my eyes completely. I live a totally different life now than I did before he was born. In many ways, obviously with the care involved but my outlook on life has changed dramatically. Now, I feel I live a more positive lifestyle. I do not take things for granted, I appreciate the little things, I avoid judging others and feel much stronger as an individual, mother, wife, and friend. I am happy and Evan is happy. Though with this positive outlook on life doesn’t mean I do not have hope for a cure. Because all I could possibly want other than what I already have, is a cure for my boy.
By raising awareness for Rare Diseases, Ichthyosis in particular, is a way to educate others. Educating others is extremely important as it can help avoid misconceptions about those who appear to be ‘different’. “Hope is in our Genes” and you can help raise awareness if you “Wear that you Care- Rare Disease Day 2013”. A friend of mine in the Ichthyosis community has created the event, “Wear that you Care- Rare Disease Day 2013”on Facebook, in hopes to raise awareness and to promote Rare Disease Day and the Global Genes Project. On February 28th wear your "Jeans for Genes" and help raise awareness for rare diseases. Laurie is collecting donations for the FIRST Foundation in honor of this event. I have already made my donation and plan to break out the denim on February 28th! You should too! :-)