Team Rachel
  • Home
  • About Rachel
    • Batten Disease FAQ
  • Team Rachel Road Race
    • 2011 Race Sponsors
      • Become a Sponsor
    • Road Race Registration
    • Road Race Volunteers
    • Sponsor Information
    • Team Rachel Raffle Prizes
    • Race Media Contact
  • The Blog
  • Donate Online
  • Contact Team Rachel
Home » Boston » Soccer!
Aug12 0

Soccer!

Posted by Kat in Boston, John, Julie, Kat, Life, London, Rachel

I signed Julie and London up for soccer!!! They will start in the fall. I have even offered myself as a coach for the 3 and 4 year olds! :) Poor Boston is going to be so upset but he is a little too young to start playing.

Today I also called about a sports group in town for kids with special needs. So many special needs activities are visually driven so I am not sure if there is anything that Rachel can participate in. I’m excited to speak with the woman involved regardless of what they have to offer.

Tomorrow John and I go into Childrens Hospital for a little bit of genetic counseling. The likelihood that John is a carrier of JNCL is very small. For those of you who are new to my blog, Rachel is the only product of my first marriage and as this is an autosomal recessive disorder, both biological parents have to be carriers for the child to become affected. The chances are very small that John (the biological father of my other three children and wonderful husband) is a carrier but we definitely want to rule out the possibility.

I am going to volunteer for a short while during Rachel’s last day of Summer School tomorrow. It will be nice to see how she interacts with the other children in her class. I feel really badly that I wasn’t able to make it into volunteer in Julie’s class during summer school. I used to volunteer a lot more than I have been able to recently.

Leave a Comment Cancel reply

Your email address will not be published. Required fields are marked *

*

*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

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.

Worth Reading

  • Annette
  • Deleria
  • JJ
  • Melissa
  • Susan

Recent Posts

  • Back in the saddle
  • A long overdue thank you
  • Kind words for Granny
  • Dear Santa Clause (by Rachel)
  • Rachel Scarecrow Story

Site Archives

Recent Comments

  • Erika on Back in the saddle
  • Mary Johnson on Back in the saddle
  • Tami on A long overdue thank you
  • Ben Foley on About Rachel
  • Ben Foley on Christmas Week

Blog Cloud

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

Boss Hog Info

  • Register
  • Log in
  • Entries RSS
  • Comments RSS
  • WordPress.org

Recent Comments

  • Erika on Back in the saddle
  • Mary Johnson on Back in the saddle
  • Tami on A long overdue thank you
  • Ben Foley on About Rachel
  • Ben Foley on Christmas Week

Tag Cloud

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.

Site Archives

© 2011 Kat von Tungeln. All rights reserved.