Team Rachel
- Raising awareness for Juvenile Batten Disease
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Day 2 Road Trip

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Yesterday we left Hull Massachusetts and drove through Connecticut, New York, New Jersey, Pennsylvania, West virginia and into Ohio. This morning we’ll be stopping by the Batten Disease Support & Research Association to say hello and meet the staff then will get back on the road and head to Kansas City where we’ll stay in another hotel.

While I was bringing the kids and a load of our stuff into the hotel I met two truckers that are staying across the hall, one of them was born and raised in Brockton, Massachusetts. Small world, right?

Today we’ll drive through Ohio, Indiana, Illinois and Missouri. <3

Picture: Kansas City at night…

0
15
Jun

December Trip – Foul Ball

Let’s see. Me and the kids planned a Trip of a Lifetime from Boston to Colorado, stopping to see family in Kansas City. The goal of the trip was to see the Flying W Christmas Round-up (Bucket List item).

It didn’t quite happen that way.

My minivan broke down in PA (water pump died and overheating commenced).

Once the van was fixed we hit lots of snow.

We ended up getting to Kansas City and stayed a few days but saw more weather heading through Colorado and Kansas and I decided it was safer to drive home.

I will do this trip again next year (earlier in the Flying W Christmas Season) and we will GET THERE!!!! …

1
02
Jan
Rachel von Tungeln is a 12 year old girl from Boston, Massachusetts who lives with a terminal brain disease called Juvenile Batten Disease. She has been robbed of her eye sight and the disease is currently taking away her abilities to talk, walk, eat and think.

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