Tuesday, April 26, 2011

Our RDH12 family is growing

Within the last few weeks, thanks to the power of the Internet, we have had three families contact us who have children with RDH12.  For a disease that only has 85 people in the USA affected, this is quite an accomplishment!  Two of those families found us.  One - we found them.

The newest family contacted us just today.  Spenta and Ferhiz - I wrote back to you today.  I saw your comment on the blog and Yahoo and got your email, and sent you a message.  So if you come back to the blog - you found us!!  We are an RDH12 family, and we have many others.  I see you went to our RDH12.org website, so I hope you got plenty of information.  I would love to talk with you on the phone, so give us a call, or send us an email.  We can't wait for you to join us!

It is very exciting to see how much we have grown.  We went to thinking that we would never meet anyone else like Finley to now knowing 9 families and 11 children!!  Amazing.  We are so blessed to have these other families along this journey with us.  With all of us working together, and more and more families coming about, we WILL reach that $250,000 goal and we WILL cure our children from blindness.

In other news:

Cainan has strep.  Yepper.  We took him to the doctor the middle of last week, as you know, and he was negative for everything.  They sent the strep test out and it came back positive.  Of course it did.  After he infected everyone.  So he was started on antibiotics yesterday and is home from school today.  At least now he will start to feel a little better.

Arlington had her softball pictures taken yesterday.  She looks so cute in her little uniform.  Her first game is this Saturday, so I will take some pictures.  She loves playing and is looking forward to her first game.  She has a full day Saturday - Lacrosse and then opening day, and then a game right after.  She should sleep well Saturday night.

My sister in law, Teen, announced yesterday that she is having a baby BOY!  We are very excited to be welcoming another nephew into our brood.  This will be our 6th nephew.  We have 2 nieces, but the girls are poorly out numbered.  We cannot wait to meet our new nephew this fall.  Our NEXT baby nephew is due in the middle of June, and then this nephew in the fall.  I LOVE new babies.  This is going to be a fun year.  Mat and I, being the oldest in our families, are the only ones who have completed our families.  So it is fun when all the new babies come along to hold.  Love it.

Finley's pancake breakfast is coming up fast.  Less than two weeks away.  We are excited about this fundraiser mostly because it is the first one we are holding in our town we live in.  It will be great to meet people who haven't met Finley and have them learn about LCA.  The more we spread the word, the bigger LCA knowledge will become, and the better our chances for a cure.  We are going to be serving yummy foods, and there will be take out available, so if you can't stay, please still come and get food!!  There will be pancakes and sausage, bacon, and fruit.  Plus drinks.  I am going to braille bookmarks for everyone who comes through the door.  You can purchase wrist bands.  You will get to meet Finley.  We can give you information on LCA.  And there will be things for the kids to do!  So come and enjoy some fellowship.  We can't wait to see you.

We are also aggressively working on our Fun Run/Bike/Walk for this summer.  If you go to www.finleyfighters.com you can see the registration form.  You can easily print this out and mail it to us - along with your registration fee.  You do not have to register ahead of time, but it is cheaper if you do!  It is going to be a really fun day.  The date is August 20th, and it will be on the Trail in Connellsville.  We are going to have our own pavilion with food, a bounce house, face painting, prizes.  And we will also have a basket raffle and a tip board - so come for some fun!  The time will be from 10-2pm.  We will start serving lunch at 11am.  If you don't want to walk/bike/run, you cans still come!  We have a separate price just if you want to come and eat and enjoy the day.  This is our biggest fundraiser this year, so we want ALL of you to join us.

And last - we have a SIGNED PITTSBURGH PENGUINS CROSBY JERSEY and authentication certificate that we will be auctioning off soon.  We are trying to decide how to set this up, so stay tuned.  But this was a FABULOUS donation by a friend of the family that works for the Penguins, so we are VERY excited!!  We will have a picture of the shirt soon, so that you can see it up close.  So if you are interested - that auction will be coming up soon!  And all the money made will go to RDH12 Fund for Sight, of course.

I apologize that this post is all words and no pictures.  It took us several hours to hang the Finley's Fighters banner (thanks Deb for all of your help) so I didn't have time to take pictures today.

Mark your calendars.  Help us with our basket raffle by offering to make one.  Send us ideas of how to auction off the Crosby Jersey.  Leave a comment.  Send us an email!  We want to hear from you.  You can send us an email at finleyfighters@finleyfighters.com - let us know!

See you tomorrow.

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