Monthly Archives: February 2015

mitchell

It’s Rare Disease Week: Please help Mitchell’s “adorable” face be seen around the world…

As my blog title says: EYE BELIEVE IN MIRACLES.  I do… whole-heartedly. How else can anyone explain the leaps and bounds our Curing Retinal Blindness mission has accomplished in less than 4 years?  How else can you explain the phone calls I get and the media releases I read regarding another person, another child, having their blindness reversed, their vision restored?  Some say it is science that makes that happen.  I say, and I know from being deep in the trenches of this for four years:  the miracle lies in the incredible support of donors and advocates, raising the awareness and dollars that we need to fund the science that we need to get the treatments that we need.

CRB1 retinal disease is a very rare disease.  There are only 300 children in the US with the most severe CRB1 disease (LCA) and only 8000 total in the world.  When a disease is THIS rare, a lot of time and attention goes into getting the word out to the world about it.  We need to get the word out to researchers that we have funds  for projects.  We need to get the word out to doctors that we have a support group for their CRB1 patients.  And we need to get the word out to the CRB1 affected families that we have more than hope… we have a plan: treatments and cures for CRB1 retinal disease.

You can help spread awareness of our mission so we can accomplish the goals I listed.  Please click the picture below to watch this 1 minute 28 second video of my youngest blind son (I have two) where he will tell you in his own words what this means to him.  And if you want to help even more, share it with your networks and social circles.  Together we can do so much.  Together we will cure CRB1.

**UPDATE: This was originally posted with the YouTube link… but two days later it was published on Ellen Degenerous’s video site, EllenTube!  Please share this link and help us get some great exposure for our rare disease! http://ellentube.com/videos/1-q9f3hj7m/

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The Eye Believe in Miracles BLOG is written by Kristin Smedley, mom of two sons living with blindness.  If you would like Kristin to speak to your company or organization about moving out of fear, past challenges, Out of Darkness and Into Greatness, send her an email at curingretinalblindness@gmail.com.   If you would like to Join The Mission to help fund cures for retinal diseases please DONATE here.    Together we can do so much.

Welcome to Holland… again….

I am re-posting this from last year.  Every now and again I have to re-read this and remember all the tulips and windmills that have come my way instead of focusing on the trip I did not get to take:

Every now  and again I send this poem/writing out to people to give an interesting analogy of what it feels like to raise a child with special needs.  While it doesn’t hold the exact same meaning for me as it did when my boys were very small and newly diagnosed as blind, I tend to revisit it at this time of year: coming up in a few weeks is Rare Diseases Week, a time for parents, caregivers, advocates and doctors of rare disease patients to come together and help push research forward.  I meet lots of people dealing with lots more difficult things than blindness, but one thing  we all have in common:  while we did not choose this path we are on, we celebrate all that it has to offer us 🙂

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

If  life isn’t going exactly as you planned, perhaps you can take another look and appreciate your path and what it may have to offer or teach you. Find the windmills… the tulips… and the Rembrandts 🙂