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Home » Rachel » Day 4!!
Mar19 1

Day 4!!

Posted by Kat in Rachel

Rachel on Day 4

John took this picture with his phone.  That is Rachel giving the “THUMBS UP” on day4.  !!!

One Comment

  1. darafb | March 20, 2009 at 12:43 pm

    Love that smile. <3

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ROAD RACE GOALS

Goal: $10,000
Raised: $24,755.44

$249% of goal!
(Percentage as of 11/11/11)

PARTICIPANTS

435 Participants

Bucket List

Eastcoast / Westcoast Road Trip!
*Organize a Batten Road Race
Go Geocaching
Hide and maintain a Geocache
4 Wheeling in Moab, Utah
Go to LegoLand
Ride a Camel
Go to Paris
Drive an amphibious vehicle
Buy a house in Colorado
Ride Codzilla in Boston Harbor
See the Flying W Christmas Show
Be in JNCL Cellcept Drug Trial
Visit Niagra Falls
Go Kayaking
Spend the weekend on a boat
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.

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batten disease BDSRA Birthday blind blind child blindness Bucket List cellcept childrens hospital Christmas Colorado cookies Death drama eyes florida Flying W geocaching girl scouts grand mal grand mal seizure grief holly humility jncl Julie key lime pie kids lamictal Life life is good London Rachel retina risperdal road trip santa Sponsors swimming team rachel Terminal Illness Thanksgiving traditions tweets twitter

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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