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Home » Birthday
May18 1

Happy 8th Birthday, Rachey

Posted by Kat in Birthday, Kat, Rachel

I hope you had a great day!!! We took her to this hotel on Friday night and out to dinner in the hotel restaurant and went on a long family walk (Bike walk) on Sunday. I don’t think my children could stuff another cupcake down their throats after last weekend. :)

The next birthday in our family is mine (8/24) and I’m turning 30!!!!

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Mar31 2

Julie is 4

Posted by Kat in Birthday, Julie

I brought cupcakes and an “All About Me” poster into her school this morning and I took this picture of her:

julieis4.jpg

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Mar29 0

Happy 4th Birthday Julie

Posted by Kat in Birthday, Julie, Life

Today was an awesome day! Julie had dance class this morning and got to hang out with Daddy at the shop for a couple of hours. Around 1pm Julies bus driver, Mary, and her 3 kiddos came for her birthday party. And a little while later Julie’s teacher and 2 younger kiddos (she has 5!) also came to our house for Julie’s party.

Since Easter was so close to her birthday I bought a ton of the prefilled easter eggs and we had a little easter egg hunt. After the children found all of the eggs, they went through the eggs and emptied out their “take” and found candy, erasers, water-grow sponge tablets and money. We ended up having a really simple cake (cupcakes) and even though I didn’t spend a bazillion dollars on party favors and an expensive “character” cake, no one seemed to notice and Julie didn’t care in the slightest. She ended up with 4 cupcakes, each with its own candle as her “cake” and she felt like a princess! I love her!

John wasn’t able to come home (the shop is open until 2pm) until halfway through the party but it was so laid back that I wasn’t stressed. (Totally unlike me!).

Awesome party. Awesome children. Awesome day.

We gave Julie the option of going out to dinner or staying home and she chose to have “Thanksgiving Dinner” at home. I ran out at dinner time and brought home a precooked turkey, cranberry sauce, mashed potatoes, fresh strawberries and blueberries. I quickly cooked mac n cheese and each of the kiddos had a Dr Pepper with dinner (a real treat for them!).

If you read my blog and think I am a bad mother for letting my toddler sons have a soda at a birthday dinner, you should probably find another blog to read. :-)

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Road Trip for Research!

On June 14th, 2012 Rachel (12), Julie (8), London (6) and Boston (5) and I will be headed from Hull MA to Eureka CA and up to Seattle and back to fufill one of our bucket list items. Along the trip we'll hand out flyers and awareness bracelets and try to raise $7206 for Batten Disease Research, $1 per mile. If you would like to assist us in our goal, please click on the link below and donate through paypal.

GOAL: $7206 ($1 per mile)
$226 Raised to date


Tax ID# 45-3078380

Bucket List

Eastcoast / Westcoast Road Trip!
Visit Redwood Forest
Swim in the Pacific Ocean
Meet Izzy and Elly
See Seattle Fish Market
Organize 2nd Batten Road Race
Ride a Camel
Go to England
Visit Niagra Falls
Go to Mall of America
See the Flying W Christmas Show
Be in JNCL Cellcept Drug Trial
Go Kayaking
Spend the weekend on a boat
Organize a Batten Road Race
Go Geocaching
Go to LegoLand
Drive an amphibious vehicle
Ride Codzilla in Boston Harbor
See a N.E. Patriots Game
Go to Santa's Workshop (CO)
Milk a Cow
Go Camping
Go Jet Skiing
Visit top of Pikes Peak
Visit the Royal Gorge
Go on the Cog Railway
Go to Disney World
Visit an Alpaca Farm
Collect Fresh Eggs
Own a Home again
Cruise to Bermuda
Go to Canobie Lake Park
Go Fishing (Rachel)
Ride a Train
Go Lobstering
Go to Santa's Village (NH)
Go to Storyland
Feed Santa's Reindeers

Things that are in progress are in have a * before it. If you think you might be able to help us experience another item on the list, please email me directly. Thank you.

2012 Road Race

2nd Team Rachel Road Race

Date: Sunday, October 28th
Time: 9:00am Race Start
Location: Hull High School
180 Main Street
Hull MA 02045
Stay tuned for more information!
Proceeds will be donated to Batten Disease Research at Massachusetts General Hospital.

2011 ROAD RACE

Goal: $10,000
Raised: $25,000

$250% of goal!
435 Participants

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About Me

TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives. Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old. Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.

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