Wednesday, May 21, 2014

Up on my soapbox, Down on my knees

Finley's event in Massachusetts is just around the corner.  This year, on June 8th, we will hold our second annual race/picnic event for Finley and our foundation.  I have a love/hate relationship with these events, to be honest.  I love that we have so many supporters and friends who will take time out of their busy lives to attend our events, donate to our cause, volunteer to help us out.  And I hate it because I hate that we have to have it.  I wish with all of my heart that we didn't need to hold these fundraisers and that Finley had healthy eyes.

But there is no use spending time on something that can never be.  So we push forward.  I want to retell our story to those of you who might be new to us.  This foundation - this is Mat's and my baby.  We saw that no one was going to help our girl and anyone like her because it is just too rare of a disease.  We gathered some other wonderful families who had children with RDH12, and together we decided we could do this for our kids.

For those of you who are used to giving to charities, I want to be clear on a few things.  1) our charity is strictly run by our RDH12 families.  100% of the money we make goes to research.  We don't have overhead, or paid employees.  2) There isn't a bigger foundation that we give money to, or that will swoop in and "save the day".  We don't have a Jimmy Fund, a Susan G. Komen foundation, or any other big name that collects money all over the country for our kids.  WE ARE IT.  If we (meaning the RDH12 families in our group) don't raise the money for a cure, then our kids don't get cured.  Simple as that.  If we don't raise the 1.6 million more dollars we need for a cure, then our kids will go blind waiting.

There is no one who will save their sight but us.  Their parents.  This weight on our shoulders is so big, that unless you are holding it, you have no idea.  I get down on my knees every night and pray for a miracle.  But all I can do is wait and hope that we will get what we need, and Finley (and all the RDH12 kids) won't go blind.  They won't have to live their lives not being able to see their friends, their family, their children.  I can't bare it.

So.  These fundraisers.  (and my harrassing).  They are a necessary evil.  Every one of you would do EXACTLY THE SAME THING if you were in my position.  You would.  No one lays down and does nothing for their child.

I know everyone is busy.  I know that spring means sports, and end of the school year, and nice weather, and on and on and on.  I get that.  But we need you.  We need your help.  We have so many ways you can help us.

For one - you can come to our event on June 8th.  If you are in the area, please join us.  You can sign up online right here:

Or, if you want to mail me in a form, you can print one out here:

OR - if you aren't able to come at all, but still want to make a donation to our fund - you can do so here:  (either from your checking account or your credit card - SO EASY).

Every dollar matters.  It brings us one dollar closer to that enormous goal.  I cannot stress enough that we have no one else to help us but you.

Help Finley keep her sight.  And Bella, Abigail, Ben, Gabby, Bill, Lily, Raphael, Marie, Darius, Aiden, Rose, Joanna, Celine, Julie, Stijin, Ceci, Brooke, Anna, Riley.


Anonymous said...


This post touched my heart!!
I wish I could come but I don't have the means. I will keep saying prayers though!!

Anonymous said...

Happy Memorial Day!!
Friend, Shayla