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 www.1foramillion.com 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 www.1foramillion.com 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.

www.1foramillion.com


Sunday, September 28, 2014

Wedding Weekend

This weekend, the last of the brothers/sisters got married.  Mat's brother tied the knot and now I have a new sister in law!  That makes it 5 for me - and I am so glad.  I love being part of a big family.

The weekend started for me on Thursday afternoon.  Mat had flown to London for work Monday of last week, and so I was on my own getting to the wedding.  Mat was going to fly in and meet us there (the wedding was in Pennsylvania).  So I decided to do the trip in two days since I was driving myself.  I was pretty proud of myself - no problems and we arrived safe and sound Friday afternoon.

The whole clan (all 23 of us - excluding Zac and Alison) were staying at a hotel Friday night since the wedding was Saturday morning.  My kids were so excited to get to see their cousins.  Most of their cousins live in Florida, so sometimes it can be a year or more that we don't see them.  And it kills us to be so far from all of those little ones (and my sister in laws) so we were glad to have a chance to be together.

Mat was supposed to land at 2pm on Friday.  At 11am he landed in Chicago for his layover to find out that all flights had been canceled.  a disgruntled employee didn't want to be transferred to Hawaii, so he decided to set himself and the control tower on fire.  I kid you not.  As most of you know - Mat has terrible luck when it comes to flying, so here we are again.  He is stuck in Chicago with no flight out in sight.

By 5pm, they decided to start to let a few flights out, so he was getting on a 7:30pm flight to Pittsburgh.  We were so relieved!  That flight turned into a flight leaving at 9pm, but he did fly.  He got into Pittsburgh at 11:30, but then had to sit in 3 hours worth of traffic to the hotel and got to the hotel a little after 3am.  He had been up for a solid 28 hours at this point, but only got 4 hours of sleep before we had to be up and getting ready for the wedding.  Poor guy.  He was a trooper.

The wedding was beautiful.  13 (and a 1/2 - Teen is due any day with number 14) kids looking so cute in their wedding clothes.  Zac and Alison had a beautiful ceremony and a beautiful setting.  It was a fun day.

Enjoy the pictures!

This was at the rehearsal dinner:


 My youngest nieces - Olive and Eden - having a chat:
 Arlington, Finley and my niece Marcail were so excited for the wedding.  Thankfully we had most of this hotel floor to ourselves!

 Arlington loved hanging with my niece, Addie.  
 My nephew Jet.  Arlington the little boy outfits so cute?  They look like little limo drivers.
 My mother in law and father in law - Sally and Ben.  Thought this picture was so sweet of her fixing him up.
 Best buds:
 Crazy girls ready for a wedding:
Wedding time!  She had two bridesmaids:
 My beautiful sister in law, Jess:
 Here come the hoodlums.  First up - my nephews Jet and Eli who were the ring bearers:
 They only got a little side tracked, but we got them back in line:
 So handsome:
 And here come the flower girls:  Arlington, Reese, Marcail, and Finley:


 Marcail and Arlington are only 8 months apart.
 Arlington and Reese:
 My nephew Gabe, and Cainan had a sign that said "Uncle Zac, here comes your bride"
 Time for the bride!  Alison looked beautiful.  I now have 5 sisters:

 Girly girls:

 Some of the kids - they did really well:
The kiss!
 Mr and Mrs. Zac Pletcher
 My favorite picture of the day.  Finley and Marcail Arm in arm:

 Baby Olive said weddings are hard word:
 My niece Reese.  Isn't she beautiful?
 Aunt Alison with her nieces (that were in the wedding):
 My nephew, Lincoln:
 Zac wanted a picture of all the kids together.  This is how you try to get 13 kids under 11 to cooperate:  You don't.


 The girls:
 And the boys:
 Left to right: Addie (running away), Reese, Finley, Eden, Marcail, Olive, Arlington, Bride and Groom, and then Jet, Lincoln, Cainan, Gabe, Eli, Silas.  Whew!
 Arlington and baby Olive:
 Marcail and her sister Eden:
 Uncle Zac and the boys.
 Jet wasn't having it:
 Gramma and baby Olive:
The men were in charge of feeding the babies.  This is about as fun as it gets when you are a dad of small children:
 Arlington and Addie:
 Sally and her sister in law (Joann - who is on the first right) and her nieces Tracy, Jeri, and Patty and Nephew, Doug:
 The bridal party:
 Ben (my father in law) and his family:  Brother Bill and his wife Connie, then Betty, and his brother Barry and his wife Kay:
 Zac with his mom and dad:
 Brothers being weird:
 The 5 Pletcher siblings.  Mat and I started dating when Jess (who is on the far left and the youngest) was 10 years old.  That was 24 years ago.  Jess, Zac, Carrie, Teen, Mat:
 Finley taking a break.
 the kids got tired of pictures and started throwing rocks in the creek:
 Time to eat!


 The cake.  It was creme puffs - so fun!
 The kids did a lot of dancing:








 Back to throwing rocks:
 Cutting the cake.
 Arlington and Jet:
 Cousins:  Doug, Tracy, Teen, Zac, Carrie, Mat, Jess, Jeri:
 Our family.  Aren't we cute?

The two youngest (for now!) Eden and Olive:
 Olive tried to take her out:
 Mat having fun with Eden:
 Gramma and Pappy broke out the bounce house and the kids ran off their energy:



 The baby sitter takes a break: