Thursday, March 31, 2011


There are 5 of us in our little family.
Mat and I have lived in 5 different states since we have been married.  (Pennsylvania, Maryland, California, Florida, and now Connecticut).
The 5 of us were all born in a difference place.  Pennsylvania - Jennifer.  Indiana - Mathew.  Arlington - California.  Finley - Florida.  Cainan - China.
Arlington pointed out this morning, that all the places we were born in all end is the letter "a".
I know how fascinated you all are right now.
This all started the other day thanks to Finley.  Finley (being herself) gave her brother a little shove and got into trouble.  She felt really bad, and burst into tears.  But what she said was:  "Cainan is special because he was born in China, and there is nothing special about me!"

After lightly chuckling at her little outburst (which was her way of getting us to feel bad she was punished.  It didn't work), we tried to tell her all the different ways she was special.
She does NOT think her eyes are special at all.  She thinks her eyes are a "pain", so I know that wouldn't work.  So Arlington is the one who came up with we were all special because we were all born in different places.  And it went from there.
Although, Grammy and Papa - Finley says you are not special because you were both born in the same state.  Sorry about that.

Wednesday, March 30, 2011

Our European Sister

I know I have mentioned this before in regards to our RDH12 Fund for Sight, but I find it even more important to mention now.

When we first started our endeavor last fall, and decided to become an official non-profit, Dr. Bennett (our researcher) said she knew of a family in Europe that had a child with RDH12 and she put us in contact with her.

We liked Sylvaine right away.  She called and we talked for hours.  She is tough, strong, and aggressively searching for a cure, just like we are.  She isn't afraid to approach researchers, doctors, anyone to get answers to her questions.  She is amazing.

So - she became part of our efforts right from the beginning.  The problem we ran into is how to incorporate the money she raised in Europe with what we were raising in the United States.

But Sylvaine quickly solved that problem, and opened our sister European part of RDH12 and called it "Candle in the Dark".  (Isn't that the best name?)  Click HERE to visit their site.  (or if you cannot see it, go to our site and visit from there.

So far, Candle in the Dark has raised $25,000 for RDH12 research.  This money is on top of all the money we have raised here in the United States.  As you know, our new goal is $250,000 to be reached by March, 2012.  So far, we have over $30,000 here in the United States raised toward that goal, and $25,000 in Europe toward that goal - making us almost a quarter of the way there.  Already.

We have a long way to go.  But we have faith that we will reach  that $250,000.  Sylvaine and her family promise to fly to the United States to be here with us when that happens.

So  - we have 5 American families so far, and one great big European family that will help us cure RDH12.  We are so excited that Dr. Bennett introduced us to Sylvaine.  Her "I will not take no for an answer" attitude is exactly what we need to get that cure.


I wanted to clear up that Finley is not adopted.  She is our biological child, and unfortunately, it was Mat and I who passed LCA on to her.  I only say this because we have several people searching our blog for Finley an adopted child.  Not that there is anything wrong with it, but Cainan is our handsome boy from China who we adopted in 2008.  You can read more about his story to the left.

Tuesday, March 29, 2011

Hunger Games

I don't have anything to write about today (shocker) and so I wanted to tell you about the book I just finished because I thought it was really good.
I didn't think I would like the Hunger Games.  Although, if you talk to Mat he would tell you that it is right up my alley because it is a book for "teenage girls".  Whatever.  But it was a really good book.  I recommend reading it.  It is a triology - there are three books in all, and after finishing book 1, I am anxious to read book two.  Mostly because book one ended as a cliff hanger, really.  So, if you are looking for a good read, I recommend this book.

This is a story of a not-too-distant future, the United States of America has collapsed, weakened by drought, fire, famine, and war, to be replaced by Panem, a country divided into the Capitol and 12 districts. Each year, two young representatives from each district are selected by lottery to participate in The Hunger Games. Part entertainment, part brutal intimidation of the subjugated districts, the televised games are broadcasted throughout Panem as the 24 participants are forced to eliminate their competitors, literally, with all citizens required to watch.

I would tell you more, but I don't want to give anything away.  I knew nothing about the book when I started it, and I am glad I didn't.


Monday, March 28, 2011

A Great day for RDH12 Fund for Sight and LCA research

I would like you to "meet" Dr. Jean Bennett
 This is the woman who will be leading the RDH12 research to CURE our kids.  CURE.

She is an amazing woman.  We met her last summer at the LCA conference, and asked her then if she would take on our kids LCA type and she said yes.  She told us what she would need to get the research done, and.....

we did it.  With the help of ALL OF YOU.  Today, with more pride than I have ever felt - we turned over $70,000 to start the research for RDH12 research at the University of Penn.

We walked into the conference room, and were met by more than 30 people that were involved with Dr. Bennett, and were invited to the luncheon and to meet us.  We were blown away.  We had a chance to talk to many different researchers and doctors, and learned so much. 
And the funny thing was - they couldn't stop thanking us for raising the money and helping to start the research.  When really - we cannot thank them enough.  We put the future of Finley's, Bella's, Abigails, Lilly's, Bill's, Aiden's, Gabby's, and ALL RDH12 kids sight in their hands today.  We pin all of our hopes for a future that has our kids as sighted people, on them.

Dr. Bennett had us take several pictures with the giant check (that thing was hilarious - real check was safe!) and many people in her lab.  Since we had to be in all of the pictures, we will have to wait for the press releases to share more photos.  I want you to see all the people that are involved - you will be amazed.

Once we were done taking pictures, we had lunch - and everyone stayed to talk with us, and listen to what we had to say and what Dr. Bennett was going to say.  They listened and answered our questions.  We never felt rushed.  They take their work very seriously.
Dr. Bennett got up and stated that she knows - not thinks - KNOWS that she can cure RDH12.  This first year will be to get "Proof of concept", which is to building the therapy (medicine) and then try it out to make sure that it does what it is supposed to do (in this case - correct blindness).  This will be done on mice.

Now, don't fret about the mice.  These are mice that have RDH12 (we understand that they are already on their way to Univ. of Penn, which is AWESOME).

She has everything she needs at this point with the money we brought her.  They already started to build the therapy and once she has the mice up and going, the rest of the year will be about showing that it does what it is supposed to do (which is improve the mice vision).

So, this first step will take about a year.  We are hoping that March of next year, we will be ready to move on to the next phase at that time.
That brings me to the next step.  Our goal for next year is going to be $250,000.  I know that is $100,000 more than I originally set a goal for, but I KNOW we can do it.  We are going to need your help to get to that number.  All 5 families we have right now in our Fund will all be pooling their efforts with us to reach this number.  We can do it.  We have to do it.

The next phase is where they test the safety of the medicine.  This is why it is so expensive.  While we know it will be perfectly safe, it is still a step that must be taken.  And then after that - on to clinical trials for humans (after miles of paperwork!).

We talked to Dr. Bennett about when she thought we might be at clinical trials for people, and her guess would be in 3-4 years.  That is it!!!  Isn't that amazing?  If all goes well, and we keep the funds up, then before Finley gets out of elementary school, she will be in a trial to be cured.

All because our friends and family (of all RDH12 kiddos) cared so much about our kids.  You made this happen.  We couldn't have done this on our own.  We stood in that room today - less that 2 years after Finley's diagnosis, and we started RDH12 research.  Years and years before it would have ever been considered otherwise. 

Other things that were discussed today is how different some of our kids present.  For example - Finley is missing her central vision, but other kids with RDH12 are missing their peripheral vision.  We were told this is common for LCA.  That most kids have some commonalities, but there are many differences and variances as well.

We asked about getting in contact with other RDH12 families, and Dr. Pierce (who sees mainly LCA families) would be happy to give any RDH12 patients he has our information to get in contact with us.  He thinks he is 3-4 families with RDH12, so we are hoping that we hear from them in the near future.

Mostly - we were asked questions - how we were able to raise this money (they were really blown away by the generosity of our families and friends), how our kids feel about all of this attention, how we met the other RDH12 families, and some of our fundraisers.

Dr. Bennett, and Dr. O'Brien (who is the chair of the department of Opthamology) sat with the kids during the whole lunch and colored with them and helped them with their food.  You could tell that they cared about them very much, and were happy to have a chance to get to know them better.

After the lunch, we took a tour of the lab.  This was so fun for the kids.  Dr. Bennett knows how to work a crowd of kids!!  She gave them all rubber gloves (they thought they had died and went to Heaven), and then showed them how dry ice and liquid nitrogen worked.  She let them look into microscopes, and showed them all around the lab.  The kids didn't want to leave.  It was very sweet of her to show them where the "magic" happens, and gave us a chance to see it as well.

At 1:30, we said goodbye and headed back to the hotel to go home.  It was hard to say goodbye to The Fiore family and Kinney family, because now it is like saying goodbye to family.  The kids had a great time together, and were already planning the next time they could see each other.
 The Kinney's

The Fiore's

Today - I sat in the conference room at the University of Pennsylvania.  Looking out the large glass windows at the beautiful view.  I thought back to a little less than 2 years ago, when I sat in the retina specialist office - Finley in my lap - and listened to him tell me she was going to go blind.  And now?  Look where we are.  After wallowing in self pity and pity for Finley for about a week, a fire was lit.  And it has grown and grown.  And we lit a fire in all of you.  And you spread it to others.  And because of that - I stood in front of the person who will cure Finley with a check. 
I just can't wrap my mind around this enough to explain how we are feeling.  I know that today, we made huge difference in the life of kids with RDH12.  Tonight - you need to give yourself a big pat on the back for making research possible on a rare, genetic disease that would probably never have been cures in our kid's vision lifetime without your help.
Arlington and Abigail became fast friends.

So get your fundraising shoes on!  $250,000.  Can we do it?  We sure can.

Life is 10% what happens to you and 90% how you react to it.  Today, was proof of that.

Sunday, March 27, 2011

We are in Philadelphia!

Tomorrow we make the official presentation of our $70,000 to LCA RDH12 Research to Dr. Bennett.  We can't wait.  We arrived in Philadelphia around 3pm this afternoon, and had a chance to go out to dinner with two of the other families that are here to make the presentation with us.

We are sad that the other RDH12 families couldn't be here with us this weekend, but know that they are with us in spirit and will be here next time!  But it was great to meet Abigail and her mom and grandma, and see Bella and her parents again.  So here are two pictures just to hold you over until tomorrow.

First picture is Abigail and Arlington.  Bottom are Bella and Finley.  Abigail is 7 and Bella is 5.  So our girls were excited to have girls their age to play with.

See you tomorrow!

Saturday, March 26, 2011

Big Bug's Bad Day

Today was Arlington's Destination Imagination performance.  The kids did a great job!  The name of their "challenge" was Big Bug's Bad Day.  From what I understand, the kids got to write the whole story, including naming the characters.  I was told that Arlington wrote a lot of the lines, so I wanted to share what was written!
Characters:  Big Bug, Queen Ant (Arlington), Butterfrina Butterfly, Pink Flying Elephant Ant with Tutu (so hysterical), and King Ant

We took pictures during the performance, but I wanted to share the actual words they wrote because it is all in their 8 year old glory, and pretty hysterical.  (and SO this group of kids).  The other Ants were black, but Arlington decided that she wanted to be a red ant.  Their team captain (adult) said she was totally fine with multi-ant-cultural family.
Without further ado, here is Big Bug's Bad Day

King Ant:  This is what happened one day when Big Bug brought bread to the Queen Ant.

Big Bug:  It took me a long time to get this bread.  I hope you like it

Queen Ant (Arlington):  NO!  I want cake!  I want lots and LOTS of cake!  I love cake, not bread!  It should be chocolate cake with extra sprinkles.  Get me the cake now or I will fire you from the kingdom!
 Big Bug:  I don't like that Queen.  I wish I could find another ant hole!

(Butterfrina and Pink Flying Elephant Ant With Tutu - PFEAT - come onstage)

Big Bug: Oh, hello, Butterfrina the butterfly and Pink Flying Elephant Ant with Tutu.
Bufferfrina:  What is the matter, Big Bug?  Why are you crying?

PFEAT:  What happened Big Bug?  What happened?

Big Bug: The Queen Ant is too bossy!  She wants cake, not bread.  She's going to throw me into the fire!

Butterfrina:  Well, I don't think she's going to throw you into the fire.  She's just going to take your job away.

Big Bug:  No.  I don't think that.

PFEAT:  Here are some things you could do

Butterfrina:  Well, Big Bug, tell the Queen, "You are too bossy!"

PFEAT:  This is another suggestion.  You could be bossy to the Queen Ant

Butterfrina: Yeah, Big Bug, you could tell the Queen how you feel and we could help you.

Big Bug:  Maybe we could all go and talk to the King Ant about talking to the Queen.

PFEAT and Butterfrina:  Yes!  Let's do that!

Big Bug:  King Ant, the Queen Ant is being very bossy to me and very picky about what food I bring her.
King Ant:  Oh wow!

PFEAT:  Big Bug told me all about what happened.  About how the Queen Ant yelled about wanting cake, not bread, and then firing her.

King Ant:  I wouldn't want t fire you, Big Bug because you are a good ant to the kingdom.

Butterfrina:  King Ant, you should talk to the Queen about what she said to Big Bug.

King Ant:  OK, I'll do that right now if you'll come with me.
PFEAT, Butterfrina, Big Bug:  Sure we will

(Queen Ant comes on stage)

Queen Ant:  Nice to see you.  why are you here?

King Ant:  Have you been bossy to Big Bug and the other ants?

Queen Ant:  (Nicely) No, I haven't.

King Ant:  Are you Sure?

Queen Ant:  Yes, I'm sure
King Ant:  Are you sure, because Big Bug, Butterfrina, and Pink Flying Elephant Ant with Tutu all say you're bossy to Big Bug and you want cake not bread.  You should be lucky big Bug brought you food.

Queen Ant:  (with attitude) What are you talking about, Husband?  I would NEVER do such a thing.  I absolutely promise!

King Ant:  I know you've been bossy.  Now you're even bossing me around.

Queen Ant:  (Shrugs)

King Ant:  Stop being bossy!
Butterfrina:  Yeah, Queen Ant!  Why are you bossing Big bug around?

PFEAT: The king is older than you and should be able to tell you what to do, not the other way around.

Big Bug:  Please use your manner when you talk to me.

Queen Ant:  I'm sorry.  Let's have a party.

Butterfrina:  I'll go get the cake.

PFEAT:  I'll get the balloons and ice cream.

King Ant:  I'll go get spoons and forks.  They are in my office.

Queen Ant:  I'll decorate the family room with party streamers and confetti

Big Bug:  I'll get a table and table cloth.

Queen Ant:  No.  I'll get that for you while you rest here on the ground.

PFEAT:  And there was a happy ending.

Isn't that cute?  They did a good job.  Disclaimer about the costumes:  Part of DI is that the kids have to make the costumes without adult help.  We try to make it as easy as we can for them, but we can't help them.  I think the costumes came out great - especially since they are only 8.