How you can help...

Hello to our family and friends!

As you all know, Vivi has a rare metabolic condition called GLUT1 DS. We are excited that our family will be attending the first National GLUT1 DS Family Support Conference on July 24th in Chicago. This will be our first opportunity to meet other families living with GLUT1. We will also hear lectures by the preeminent researchers in GLUT1 to include the doctor who discovered the disorder (Dr. DeVivo). Since there are less than 150 people in the world who have been diagnosed with GLUT1 there is no national organization to help with funding. All of the families attending the conference will be covering the expenses for the researchers to come to Chicago.

In an effort to lessen the impact on each family, a number of us are holding fundraisers. We're partnering with the Colleen Giblin Foundation (http://www.colleengiblinfound.org/) to raise funds for the conference with any additional monies remaining going directly to GLUT1 research. Please help by sponsoring Vivi to attend the conference. Any amount you can send would help Vivi directly. You can make checks out to Rachel Kuypers and mail it to our home, or send money via PayPal to rachkuyps@yahoo.com. Ryan & I will then write one big check to the Colleen Giblin Foundation.

As a bonus, GE Healthcare (Ryan's employer) will match the donations. Our family's goal is to raise $3,000 (which will become $6,000 thanks to GE) by June 30th. We will keep you all updated about our progress along the way! You can also send a donation directly to the Colleen Giblin Foundation and get a tax deduction receipt. To ensure funds are used for GLUT1 please use the address below when sending your donation.

Colleen Giblin Foundation

restricted for:

Glut1 Conference & Research

690 Kinderamack Rd, Suite 104

Oradell, NJ 07649

As a fun bonus anyone who donates will get their name in a drawing for one of my minky blankies. It will be a patchwork blankie measuring 60"x72" and Vivi has rated the fabric "comfy & cozy" and it is so soft you'll want to cuddle up in it right away. I'll ship the winner the blankie by August 1st.Vivi, Ryan and I really appreciate any help you can provide. Vivi's our sweet, silly, smart and sassy girl and we hope that through research someday she'll get to do everything that other kids can do.

Love, Ryan, Rachel, and Vivi

The Kuypers Family

2340 S. 57th StreetWest Allis, WI 53219

Urban Farming!

So I've been very busy in our yard the last few weeks. I'm not quite sure why I decided to tackle such a large garden (or small farm) but I'm really looking forward to the "vegetables" of my labor! ;)

Here are some "before" pics:

This is right outside our side door. Corn, onions, watermelon, & pumkins. I can always transplant things as they grow.

This is the side of our house. I planted tomatoes, zucchini & broccoli last year. I need a lesson in how to get broccoli to do something other than growing 3 foot tall yellow flower stalks. I also added some orange sweet bell peppers this year.

Here are my radishes, garlic & onions. The white cans are for starting my herbs (recycled KetoCal cans... Oh yeah... I'm green). Hopefully those evil (but cute) chipmunks won't eat any more of my shoots.

My lettuce and arugala are starting to sprout so that's exciting. I'm looking forward to going out and picking a salad in my yard!

More Generous Donors!

Well the checks have been rolling in and we couldn't be happier!

We're nearly to $3,000 which when matched will pay for the entire conference! That means all the other fundraisers can go toward establishing a permanent GLUT1 Family Support Group as well as contribute to GLUT1 research!

Dianne Kuypers & Mike Colburn
Kyle Kuypers
David & Hayley Violand
Sue Dowell
Thad & Michelle Tribbey
Deb & John Shoedel (Britt & Jessie)
Jon & Jill Schram
Doug Washington & Julie Bertoncin

We still have my "Stamp a Year of Cards" event on June 6th so I'm keeping my fingers crossed that we get the rest of the way to our goal with the raffle.

Thanks again to our amazing family & friends. Vivi and all the other GLUT1 kiddos say thanks too! I'll be sure to take lots of pictures at the conference.

Woohoo donors

A very big THANK YOU to our donors so far:

Becky & Rob Alfred
Barb & Eric Burgess
Aimee & John DeJarnette
David McCrane
Sam Rodriguez
Joe & Viv Falkoski
Corry Michaelis
Jim & Carol Washington
Allana Bryant
Sebastian & Joanna Staszecka

Learn more about GLUT1

I thought I'd post a link with some helpful and non-jargon information about GLUT1.

http://site.matthewsfriends.org/index.php?page=glut1-ds

The video with Dr. Klepper is about 45 minutes long so fair warning :) It's VERY informative. If you scroll all the way to the bottom there is a link to a YouTube video of Vivi having one of her eye spells (they didn't hurt they just frustrated her).

Thanks!

Holy Camoly Lollipop

So that's Vivi's new saying and it applies to our fundraising donations so far! We just got another check from one of our super generous friends and we couldn't be happier. We are so blessed to be surrounded by such generous and giving people! THANK YOU, THANK YOU, THANK YOU!

On a silly note Vivi decided it would be tasty to dip her popcorn in the olive juice remaining on her plate after she finished her olives. Ugh... she thought it was "so tasty and delicious"! Her vocab sure is coming along... now if I can just get rid of the sassy talk.

Spring has sprung

So it's finally nice here in Milwaukee. Our plans are rolling along for the Year of Cards stampin day fundraiser as well as donations from out-of-town family and friends.

You can track our progress with our thermometer on the right! You can see we're off to an amazing start thanks to two generous donors!

Off to enjoy the rest of the afternoon outside with Vivi. :)

The USA according to Vivi

Vivi and I were having some fun time this afternoon and were working on her USA map puzzle. It's from the Target $1 spot so from New York to Maine it's all one piece... sorry New England your teeny tiny states don't warrant your own pieces! She likes to put in the "easy" states first like Hawaii, Alaska, Texas, and California.

So Vivi holds up Alaska and I ask her which state it is and she tells me "Ackafornia". Hmm I guess we need more work on our states!

Her fine motor skills are better since she's been on her ketogenic diet (just passed the one year mark) so it's a lot less frustrating for her to do puzzles.

It gave me a giggle....

A Year of Cards Stamping Day

Join me in West Allis, WI on Saturday June 6th for a day of stamping fun! Well make 12 cards (with stamped envelopes) plus a magazine file style holder. The cost is $25 and will include lunch, door prizes and a fun little goodie bag.

I have room for 50 people and there are still spots available (but they are filling up fast).

I'll be having a charity raffle to benefit the Colleen Giblin Foundation with funds restricted for the GLUT1 DS Family Support Conference. This will be the first national conference for GLUT1 families and will include talks but numerous GLUT1 researchers even the doctor who discovered GLUT1 in 1991. This will be a unique opportunity to learn more about GLUT1 from the experts (there are only a handful in the world) as well as share and learn from other families living with GLUT1.

HERE ARE THE DETAILS:
WHEN: Saturday June 6th, 2009 10am-4pm (Deadline to sign up May 1st 2009)

WHERE: Parkway Recreation Center
2930 S. Root River Parkway West Allis, WI 53227

WHAT: A "Year of Cards" Stamp Camp. Make cards for Valentine's Day, Easter, Mother's Day, Father's Day, Halloween, Thanksgiving, Christmas, Sympathy/Get Well, Thank you, Anniversary, Birthday, and a Baby card. The cards will come with envelopes and we will also make a mini-magazine file card holder. All supplies are provided and are Stampin Up only! These will be quality cards and will definitely be a step above simple cards. All skill levels will find these projects enjoyable! Never stamped before… don’t worry I’ll teach you everything you need to know to create fabulous projects with paper.

WHY: All the fun of a shoebox without all the prep! Come and have fun and meet some other fun & crafty ladies. There will be TONS of door prizes with the grand prize of a BIG SHOT STARTER KIT (retail value $195.95!!). You don't have to order the starter kit you'll literally take it home with you that day!

HOW MUCH: $25 you'll get a lunch and yummy treats to give you stampin power. This fee is for the location, lunch and door prizes. A charity raffle will also take place but participation is optional. All funds from the raffle go directly to the Colleen Giblin Foundation for the GLUT1 Family Support Conference.

If you'd like to do swaps let me know what interests you and I'll get a sign up going. I LOVE swaps too! We’ll be doing a double layout 6”x6” scrapbook page swap but if there are others you’d like let me know!

Hello Blogasphere (how ever the heck you spell that)

Well I've finally gone and jumped on the blogging bandwagon ( I know I'm a bit behind the trend).

I'm hoping this blog can help me inform people about GLU1 DS (Glucose Transporter Type 1 Deficiency Syndrome) that affects my daughter, as well as only about 150 other people in the world. With such a rare genetic disorder you often feel alone so I'm hoping others will connect with me to share. I'll post more about GLUT1 later.

I also LOVE all things crafty. I am a brand new Stampin' Up! demonstrator but so far that is just a hobby. Once Vivi is in school full-time perhaps I'll be able to expand it into a full business. I sew & quilt (I'm mostly self taught so reading a pattern is still like reading Chinese to me), stamp & scrapbook. I have a little "business" at www.bellebebeboutique.com. I make super duper soft and lovey baby blankies as well as lots of other items.

Thanks for reading and I'll try to put interesting info on here or at least something not completely mundane and banal (your word of the day!).

:)