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Home » Posts Tagged "Julie"
Aug24 2
Today is a great day!

Today is a great day!

Posted by Kat in Batten Disease, Birthday, Fundraiser, Halloween, Julie, Kat, Life, London, Rachel

Today is my 33rd birthday so I imagine my Mom is once again thrilled that she is no longer pregnant with me (I am mostly joking lol).  I was born over 3 weeks late and weighed over 10 pounds so I really can’t blame her.  Thank  you Mom, aka Eileen, for giving me life and putting up with my crap, foul language and obnoxiousness all of these years.  :)

I also want to thank my Mom for being the first to sign-up for Rachel’s road race which is in 2 months.  I can’t say I was outright nervous that no one had signed up because I know people are really busy with “back to school” whether it is their child or grandchild headed back in the next few weeks.  I guess my Mom had mental telepathy and for that I am so grateful.  We have one official walker!!!!

This week I am finalizing the Sponsor information for businesses who can give over and beyond the registration fee as well as walkers and runners who will ask their friends to donate on their behalf.  Plus the prizes and raffle items.  I have never done this before and got some really great ideas at the Batten Disease Golf Tournament I took John and the girls to yesterday.  They raised about $30,000!!!!  My goal is to raise $10,000 this year for our walk/run/raffle.

Have a great day today if you read this entry!!!

Photo: Rachel (6), Kat (?) and Julie (2.5).  Not really easily seen is London who was 8 days past his due date and born the next day.  We were at a pumpkin patch in Colorado.

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Aug13 1

Meet Juliebean

Posted by Kat in Julie, Life

Meet Julie. She is a 7 year old 30 year old who is tremendously helpful and caring!

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Feb17 1

Julie rides the Fire Truck

Posted by Kat in Julie, School

Julie won the first grade Read a Thon prize of riding the fire truck to school! Here is Julie riding in the truck!

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Nov06 2

Busy week

Posted by Kat in Batten, Julie, Rachel

Lots of good stuff going on with work, Rachel changed to a new medicine and London was covered in spots (the chicken pox). Rachel has lost about 6lbs (I’ve found at least that much) and we ended this week with a ham dinner with my parents and brother.

Rachel watched “Ice Princess” tonight which is a movie that she used to watch A LOT but hasn’t seen it since going blind. She kept on saying things and asking questions that only a sighted person would be able to ask / say but it was obvious that she was recalling the visual memories of watching the movie years ago while listening as a newly minted blind person. I can’t describe the complexity of how that broke my heart in at least 3 different ways.

You may not know that I often refer to myself as “The Iron Maiden” because I “never” cry (it is a rare event) but thinking about what it must be like for her to not be able to see, how confusing things are for her. It sends me over the EDGE and my iron clad tear ducts fly open.

Tomorrow I am taking the girls for haircuts. Julie says she doesn’t want hers cut but will come along for the ride. Rachel needs her bangs trimmed. I believe Julie is declining the hair cut because she is obsessed with becoming a princess and I am guessing that she thinks all princesses have long hair. I should show her pictures of Lady Di and cross my fingers that she agrees to getting the wedge cut again (she looked so cute in that!).

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Feb05 2

Friday

Posted by Kat in Doctor, Julie, Kat, Life

Today I am taking Julie to Children’s Hospital to have a recently discovered heart murmur checked out by a cardiologist.

Julie has spent the last week telling everyone she knows and then immediately following it up with “don’t worry, I’m not worried.”

She is such a good girl. I’m looking forward to having a few hours alone with her. Will update later.

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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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