Friday, February 28, 2014

Rare Disease Day 2014

Today is Rare Disease Day. A day celebrated every year, on the last day of February, to honor, recognize and raise awareness for all of those living with or caring for someone with a rare disease. As you know Evan is affected by Harlequin Ichthyosis. Which is only one of thousands and thousands of rare diseases. We are not the only ones in this world facing challenges and some do not even have treatments for their condition.

So we are lucky. Very lucky. We are lucky that we have information and medical advances availble to live our lives to make it through the day, months and years. We are lucky that even though Ichthyosis is rare and has no cure, we have a community to help support us and connect us with others who share their care routines, their product suggestions and tips & stories on how to face society. We are lucky to have researchers who are dedicated and passionate about their work- looking for new and better treatments and ultimately a cure.

Mommy and Evan wearing "Jeans for Genes" in support for Rare Disease Day
(Would you believe it if I told you this is the first an only picture I took!)

That is why today is an important day. A day to raise awareness for all rare diseases. To advocate for these conditions so others become aware and can spread the word, to help. It is a day for those affected to celebrate life and show others that even though living with a rare disease may be hard, life can still be wonderful, eventful and happy.

Because that is how we like to live our lives. Happy. Of course there may be a bad day here or there but we never let our challenges control our life. Life is precious and life should be lived positively and optimistically. We never had depressing, weak or low stretches in our life with Evan (even when he was born) because we chose to keep our heads high and never give up hope. We appreciate the life we have been given and always have.

This is the official video for Rare Disease Day. Learn more and read more stories about others living with a rare disease at