We Are Rare

Jordan and I have been away for a week of medical appointments, any guess whether it was a good week or a terrible week?

With each trip we end up finding a new thing that we can't do without, here is our list of our favorties!

Are you looking for the perfect gift for someone in your life who may have low muscle tone and may be in a wheelchair, well look no further we have compiled a list of our favorite things!

3 helpful things you can do when someone in your life receives a difficult diagnosis.

In March we were able to make a dream come true, visting Paris.  This dream has inspired a whole Dream it Do it list.

What if we let people help us access the world??

Can you grieve someone that is still alive?  Is grief only something we feel once someone passes?  No one prepared me for anticipatory grief and how hard it would be.

Hi! My name is Brock. I am 13 years old, I’ll be 14 in December. I have a rare diagnosis called Hypomelanosis of Ito. I do not speak, but I expre...

It is with heavy hearts that Pete and I must share some news. Jordan has recently been diagnosed with a rare degenerative terminal disorder called GAN (Giant Axonal Neuropathy).

When all of my friends in High School were discussing which programs they were going to take in University and what they wanted to be when they “grew up” I can remember thinking that my 1 and only desire in life was to be mom.