Toast to a Cure!

We're getting close to Toast to a Cure! It's just 1 week away!! This is sure to be a great evening of wine tasting, great appetizers, live jazz music and some great door prizes!! The best part - all money goes towards finding a cure for Rett Syndrome! We're selling tickets in advance to ensure enough food and wine for everyone :) Tickets are $30 each or 2 for $50 so buddy up and email me or go the the website to buy your tickets! We hope to see you there!

Everyday Miracles and CK photography

A few months ago our family was blessed to have a wonderful, talented friend take pictures of us. Christy is a friend of mine from high school. She had heard about Annie's story when we reconnected via facebook. Christy was so gratious to take the trip from Grand Rapids to come out and do a photo shoot in downtown Rochester. Christy posted pictures of Annie along with her story on her blog and what's more is she made a slideshow video of our family. Christy is amazingly talented and has such a gift for photography and capturing the spirit of families. You can click on the CK picture to the right to check out her blog and see what I mean!

Thanks Christy! We Love You!!!

This past Monday we went to a wonderful fundraiser at Lino's in downtown Rochester in honor of a very special angel - Rachel. We met the Morris's about a year ago and it has been so refreshing to get to know them and their family. It's nice to be able to talk to discuss things and lean on someone who really understands your struggles. We love you guys and had a great time catching up on Monday!

Annie just loves to get fancy when she's going out!! Sorry the pictures a bit blurry but you get the idea with her fancy coat and huge smile!

James has been adjusting to Kindergarten and his new school. He's making friends, he's joined the runnning club and just this week he was recognized as a Cool to Care Kid. Cool to Care kids are students who show kindness and good will towards each other. We are so proud of him!!

James stretching at running club

The "Cool to Care" tree

Toast to a Cure

Our website for Toast to a Cure is up and Running! Go check it out! Taost to a cure will be held on Thursday, November 5 from 6:30 - 10pm at Fieldstone Winery in Downtown Rochester. The evening will include live music, wine tasting and an auction all to benefit rett research! Advanced tickets only and space is limited so head to the website and check it out!! Hope to see you there!

Runnning for Rett!

Today was the Brooksie Way Half Marathon! What an awesome run! The weather was great, no rain and comfortable high 50's/low 60's. The race started at about 8:15. Scott and I ran together for about the first 4 miles or so which was nice, we got to chat, catch up, joke around - we don't typically run together (someone has to watch the kids) so we're not used to that but it was really great to spend that time together. At about mile 4 1/2 Scotty picked up the pace and went on ahead. That's when I decided to turn on Pandora and for the next 8 and a half miles or so I rocked the Christian music and prayed for a cure. I prayed for all of our angels, especially our critical ones right now and those with seizures that can't be controlled, that their suffering would be eased. I prayed for our researchers and rett specialists, that God would direct their thoughts and actions. I prayed for our parents that wake every morning and put on their boxing gloves ready to fight Rett once again. I prayed for all of the rett organizations and those on the front line raising awareness and funds for our angels. I prayed for October and that all of the fundraisers this month would be wildly successful. And lastly I thanked God for his mercy and that in His perfect time our girls will be healed. "For I will restore health to you and heal you of your wounds" said the Lord. Jeremiah 30:17

I know one day soon my Annie will be runnning along side me - actually, she'll probably blow right past me! After battling Rett anything else is cake.

A huge thank you to everyone who donated to the run. We raised $370 for Rett Research!

Oh yah, stats: Scotty: 1 hour 58 minutes Bridget: 2 hours 2 minutes

Blessings!

Disney on Ice

Scott and I took the girls to Disney on Ice today. We all had such a wonderful time! Gracie dressed up as Tinkerbell and Annie was Cinderella - Scott and I decided to go as ourselves! ;)

October is Rett Syndrome Awareness Month!

October is Rett Syndrome Awareness Month!!

Did you know:

- Rett syndrome strikes at random - any expectant parent is at risk for a child with rett
- Girls with Rett Syndrome are born healthy and normal, they regress between 9 months - 2 years.
- Another little girl is born with rett syndrome every 90 minutes
- Rett Syndrome is as prevalent as cystic fibrosis, huntingtons disease, and ALS
- Rett syndrome was reversed in a mouse model in Feb. 2007
- Without private funding a cure for Rett Syndrome remains decades away, the Science is there, the funding is not

Want to help?
-email me to help with a fundraiser already in the works
- have kids in school? Ask me about dress up to cure!
-do you or someone you know own a business? Ask me for a collection jar for donations.
- do you make or sell a product? Consider giving part of your proceeds to rett syndrome
- have girls in brownies or girl scouts? Ask me how to get the troup involved
- Have your own idea? Lets talk!!
- don't have time but want to help - consider donating in honor of Annie
- don't have the time or the money? How about telling someone about rett syndrome - help spread the word.
With your help Rett Syndrome will be the first curable neurological disorder! You can be part of this miracle!

I know its been a long time since I last updated the blog so I just want to post a few pics of Annie in her new therapy things. This on is her Benik vest - it helps strengthen her core muscles so she is in better alignment when she's up on her feet.

These are Annies new hand braces that help keep her thumb in proper alignment away from her fingers so she is better able to use her hands. We think she looks like she's taking wii bowling a bit too seriously!! ;)