Monday, October 20, 2014

Why Lebers Congenital Amaurosis sucks

When Mat goes away on business trips overnight, one of my kids asks to sleep in bed with me.  They look at this as a fun sleepover with mom and I don't mind the company.

Usually it is my oldest, Arlington, who stays because she gets up very early for school, and I don't want her disturbing the little ones.  But last night - after much begging - Finley won out.  She was excited to have a chance to sleep in the big bed, so she quickly got her favorite stuffed animal and her books, and settled in.

When I finally came to bed about 11pm last night, I had a chance to watch her as she slept.  Since I cannot turn the TV on when the kids are with me, my mind started to wonder.  With no distractions, I started to think about her future.   We have been working so hard to save her sight, and yet, the end of the tunnel still seems so far away.  The mountain we now have to climb to make it to the end seems huge.  How are we EVER going to raise a million dollars in a year so that our kids don't lose any more vision?

Last night, before bed, I had a chance to talk to one of our families in our group.  He has a daughter who is 14.  He told me last night that she has completely lost her vision in her right eye.  This fact also came back to me as I was lost in thought.  We are running out of time for his daughter to save her remaining vision.  She is only 6 years older than Finley.  IS that all the time we have left until her vision is all gone?

There are nights like this that come more often now that we are getting close to clinical trials.  The cure might be ready, but the money won't be there.  That is our biggest fear.  After 4 years of rock star fundraising and amazing support, it still isn't enough to get us to our goal.

These moments of panic are brief, and by morning I had a renewed sense of strength.  What other choice to we have?  We have to push onward to the finish line.

No one lies down and does nothing for their child.  We will save Finley's sight.  And all the other kids who have LCA RDH12.  We will.  We just need a lot of help.

Join us now.  Go to and help us cross the finish line.  Please don't make us wait.


Anonymous said...

yes, that is a hard struggle to deal with I have faith that the impossible will come a reality for Finley and the other kids :)

again... I am sending money!!
God bless!!

Boo said...

So glad Ginny shared your blog post. I plan to share it on my Facebook page in a minute. We are Susan & Charlie's age and have been friends and neighbors for 23 years. Ginny & our Annie grew up together. I got to be one of Bill's caregivers when he was a baby! So fun! We always look forward to seeing the Pryor children playing across the street. I have watched the vision loss with deep sorrow, but am filled with HOPE for all of the children. Finley has been in my prayers. We will be giving as much as we possibly can this year and I will promote everything on my page and blog. Blessings and love from Betsy Grimes ( Boo is my blogger & grandmother name.)