3 little fish

3 little fish

Posted by in Batten Disease, Kat, Life, Rachel, Road Trip

Love these kids, they love the water and swimming so much! <3

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Rachel – Hottubin’

Rachel – Hottubin’

Posted by in Batten Disease, Kat, Life, Road Trip

Due to the excessive heat in Colorado we have checked into a hotel for the remainder of our stay. Rachel had the pleasure of sitting in a hottub for a little while, something she really enjoys but doesn’t get to do too often.

Life is good!

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McCarthy Meet-up

McCarthy Meet-up

Posted by in Batten Disease, Kat, Life, Road Trip

We went out to lunch with dear friends at Poor Richards in downtown Colorado Springs. Vegan, gluten free or anything else you could possibly want. It was the best food I’ve had in a very long time!

Check out their website: http://www.poorrichardsdowntown.com/

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Team Rachel with another Batten Mom

Team Rachel with another Batten Mom

Posted by in Batten Disease, Life, Road Trip

Sadly, her son passed away last year but that doesn’t stop us Batten Families from sticking together. Thank you to Cheri who treated us to lunch this week! <3

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Team Rachel at GOG

Team Rachel at GOG

Posted by in Batten Disease, Life, Road Trip

Team Rachel is safely in Colorado Springs Colorado and had the pleasure of visiting Garden of the Gods yesterday! Today we’ve been hiding out because of the record temperatures (Rachel and the clan don’t do well in the heat).

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Day 2 Road Trip

Day 2 Road Trip

Posted by in Life, Road Trip

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

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Team Rachel is mobile

Team Rachel is mobile

Posted by in Life

Headed to Ohio from Boston today!!

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Day 2 of Lemonade Stand

Day 2 of Lemonade Stand

Posted by in Life

Today starts day 2 of the Team Rachel Lemonade Stand from 12pm – 8pm at 35 N Street in Hull. If you cannot physically attend our stand but would like to buy a glass or two online, please click the link below that says “donate.”

We raised over $2,000 dollars yesterday (Day 1).

All money is being donated to Batten Disease Research at Massachusetts General Hospital’s Center for Human Genetic Research.





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Lemonade Stand 1 of 2

Lemonade Stand 1 of 2

Posted by in Batten Disease, Fundraiser, Fundraising, Life

Today starts day 1 of the Team Rachel Lemonade Stand from 3pm – 8pm at 35 N Street in Hull. If you cannot physically attend our stand but would like to buy a glass or two online, please click the link below that says “donate.”

All money is being donated to Batten Disease Research at Massachusetts General Hospital’s Center for Human Genetic Research.





The featured image for this post is a satellite map of Hull, Massachusetts.

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News Feature!

News Feature!

Posted by in Fundraiser, Fundraising, Life

Yesterday Team Rachel and our Road Trip 4 A Cure was featured in the Hull Times!!! We are on the FRONT PAGE and between the cover and the remainder of the story, both a picture of Rachel and our lettered minivan were included!

The best part of this week being our week for feature is that every household in our town received a complimentary copy of the Hull Times because it included the summer guide. We are about to hit $1000 in donations plus several more are promised and I am bubbling over with support and kind words from people. That has been one good thing for me personally to come out of this journey is that I spent years feeling alone and wishing I could meet people and have friends.

I took myself out to lunch yesterday (first time ever) after Rachel declined the invitation to leave school early (I had volunteered all morning and was tired and hungry so there was no hope I was going to actually eat something healthy unless it was made for me). When I arrived at Barefoot Bobs I sat at the bar and within 60 seconds had ordered a house salad on greens with a margarita and was then invited sit with new found friends (husband and wife who live on my street) because they saw I was alone.

Yesterday I realized I’ll never feel alone ever again. Having kids, having Rachel and this journey as horrible and unimaginable as it is watching your child slip away, I am grateful to be walking in my shoes with such amazing people in my life (near and far).

Please come to our lemonade stand on Monday (3-8) and Tuesday (12-8). 35 N Street in Hull!

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