Sunday, February 28, 2010

National Rare Disease Day 2010...

global genes project


Today is National Rare Disease Day -- millions of children are born with what is considered a rare disease.  Mitochondrial Disease is one of those rare diseases that steals the lives of children and adults everyday.  We hate Mito -- it took our little boy away.  Take some time today to learn about this rare disease.  Visit the United Mitochondrial Disease Foundation and learn not only about the disease but also the hope for a cure and of course see our beautiful little Gavin's smile on the homepage.

Even though chances are most of you reading are lucky enough not to have to deal with the effects of a rare disease -- fact is so many children and families are suffering.  Rare diseases are horrible.  One thing that makes them so horrible is that unlike cancer and heart disease, these families struggle to find community -- struggle to find people who can identify with them, who understand.  Take a moment today and say a prayer for all the families struggling to find hope.  Many of these illnesses have no cures and no therapies.  These families get a diagnosis and then spend countless hours sorting through the mystery of their child's illness.  It just stinks.

UMDF- Hope



4 comments:

Erin said...

Love this blog tonight!

Phyllis said...

Wow, I had no idea!! I think we would qualify! My boys are numbers 6 & 7 ever to be diagnosed with Mandibuloacral Dysplasia. It is so true about searching for a community yet continuing to feel isolated because there is no one else out there that knows what you are going through. Thank you for raising awareness.

Brittney said...

Raising awarenss is what its all about! Prayers all around.

gilda said...

Letting many know the awareness of this disease...I for one did not know of this till I found your blog and learned your story with Gavin. Thank you for informing us of this "Remembering Gavin always"