Friday, October 31, 2014

Happy Halloween!

Trick or Treat!

While Halloween is one of my least favorite holidays, the kids love it.  They got on their costumes, we went and got some candy, they attended some parties, and now everyone is asleep.

And I may have had one of their twix bars.

Here are some pictures from today:

Arlington's pumpkin this year:
 Cainan's pumpkin:
 Finley's pumpkin
 Finley's teacher and 1:1 aide.  They are hilarious
 Finley's friends at school.
 Ana and Elsa from Frozen and.....Dunkin Donuts.
 Cainan in the school parade:
 Arlington's costume this year - she was a Raccoon:
 Finley was Ana from Frozen.  Sue Stoner made her this costume and it is by far the most beautiful costume she has ever owned:

 Cainan was a Ninja from Ninjago:
 Arlington went and trick or treated with her friends (and their parents), so I took the littles to another neighborhood with some friends of ours.  They had a great time.
 After Trick or Treating Stash:

Last day for October's One for a Million Prizes

We are wrapping up our first month in our One for a Million Campaign for our RDH12 Foundation.

It has been a successful first month, and we hope it continues to grow as time goes along.   We have a lot of money to raise, so consider helping us achieve our goal.

This month you are able to win one of two prizes:

We have a wall hanging with the word Vision in print and braille
 or this month's keychain which is Massachusetts.

Each month the prizes will change, but will be similar, so collect them all!  How do you get one you wonder?  Well - you can either donate $20 or more, or do some of our contest on our page to earn 200 points!

Visit  now and click the big red button that says DONATE and help us today!

Saturday, October 25, 2014

Monthly Giveaway for One for a Million

We are nearing the end of our first month of our One for a Million Campaign.  It has been a successful month and we hope the momentum continues.  We have a lot of money to raise, and we need YOU!

Each month, we have a give away.  You qualify for the give away if you give $20 or more, or you earn 200 points in our contest.  Or both!

Here is what you can win for the month of October.  You get to pick ONE:

The first is a wall hanging.  We will be doing a different word each month, and the words can then be strung together to make an amazing wall hanging of inspriational sayings.  Fist month's square says "Vision"
 Your other choice is a keychain.  We will be changing the state each month to represent all the states where our kids live.  (and countries too - we have a lot of international kids as well!)  The first month is MA.  You will want to collect them all!

So get over to our website today.  Only 1 more week left to win one of these amazing give aways and help us get closer to that million dollars.

Wednesday, October 22, 2014

A Beautiful Quilt by an Amazing Woman

While we were in Pennsylvania for my brother in law's wedding a few weeks ago, my mother-in-law showed me a quilt she was working on.

Isn't it beautiful?  It consists of all the t-shirts we have had for Finley's events over the last 5 years.  And she even put some braille on there (it is on the left and it says Gramma).

I love it beyond words.  She is a very talented quilter, and we will treasure this quilt forever.  I can't wait to see the finished product!

Tuesday, October 21, 2014

Donate a Dollar Tuesday

Today - and hopefully every Tuesday until our campaign reaches our goal - will be known as Donate a Dollar Tuesday.

Today we ask you to donate $1.  Just $1.  We have several ways you can do it.  The easiest is by your credit card or bank account withdrawal, right on the computer!

DONATE NOW (click on the words and it will take you where you need to go)

Or - if you see me, or my parents, or Mat's parents - you can give them a check (made out to the RDH12 Fund for Sight) or $1 cash!  It is that easy.

So donate $1 today.  We can't do this without you.  Help us climb this mountain and reach our goal!

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.

Wednesday, October 15, 2014

One for a Million

Have you been over to our new foundation website yet?  We are encouraging everyone to check it out!

We are tasked with raising a LARGE amount of money this year.  Can you help us do it?  A million dollars isn't easy for a few of us to do alone.  But if everyone pitches in - even ONE DOLLAR - and helps us spread the word, then we can do this.  We can cure our kids.

So head over to and check it out.  Want to earn some points and win some cool prizes?  You can!  Want to make a small donation?  You can!  It is SO EASY and you don't even have to leave your couch.  You can pay by credit card, bank account withdrawal, or write a check.  Every little bit helps.

And help us spread the word.

We thank you.

Thursday, October 9, 2014

World Sight Day

Today is World Sight Day

From a mother who has a child who is going blind, I am here to beg you to protect your eyes.  Wear Sunglasses outside EVERY DAY.  Even in the winter.  Wear protective eye gear when you are working.  (including mowing the lawn).  There are so many ways to harm your eyes, and it can happen in an instant.

We would give anything for Finley to have good vision.  Think of her and protect your eyes.  You only get one set, so keep them healthy!

Saturday, October 4, 2014

One For A Million

On October 1st, our RDH12 Fund for Sight started a new campaign to raise the last million dollars we need to fund our clinical trials.  We are hoping to be at clinical trials by the end of 2015, but we can't get there without the money necessary.

So we decided to launch a fun competition to help us raise those funds.  There are ways to earn points and earn rewards.  We feel that if we all work together we can get this done and get our girl - and all of our RDH12 kids - cured before they go completely blind.

So check out the website.  Make a donation, or try a competition.  Or both!  We appreciate any and all help we can get to make this a reality.