An oldie but a goodie, dear friend Geri Calos has organized a night of painting and is donating $5 from each registration to Batten Disease Research! Please consider signing up if you can, this is located at Sea Dog Brew Pub in Hull, Massachusetts! Click to register!Read More
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.Read More
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!Read More
Happy to report that after a weekend of the girls puking and Rachel having a seizure on Monday at 4am, both girls are well and back to school (and Rachel back on her meds!). Most parents don’t think about the vomit virus, more than feeling bad that their kiddos are sick and how gross cleaning up puke is. And while I agree that it sucks to clean up puke and I hate when my kids feel sick, getting the vomit virus is more than that. When Rachel cannot take her meds we run the risk of her having a seizure and that is exactly what happened this weekend. With every grand mal seizure another piece of Rachel is lost, a piece that will never come back. :(
In brighter news I attended a Batten Disease Fundraiser on Saturday Night in Swansea, Massachusetts that had about 350 people in a beautiful event hall with dinner, dancing and a comedian. At the end of dinner, before the comedian started Moe (a father of 2 CLN7 boys) and myself gave brief talks and at the end of my talk I presented Moe and his wife Jean with the $25,000 that we raised through Team Rachel Road Race in October 2011. Jean and Moe will be giving the money to research because they have a registered non-profit and can donate directly to Dr Cotman who researches Batten Disease at Mass General Hospital in Boston (which is the same hospital where Rachel receives Batten Disease care).
At this point I am looking into planning a Batten Disease Dinner / Dance / Comedian Fundraiser up here for hopefully a Saturday night in May. If you are interested in helping plan or know of a venue that can hold at least 200 people… get in touch. :)Read More
From a dear friend who, if possible, Rachel would steal this friend’s husband and marry him one day.
The complaint is that the website background is (well, was) too grown-up and “isn’t this a website to represent a child?”. This friend is right… so I’ve decided to keep the website theme in tune with upcoming Holidays and Seasons. So if you hate the new Halloween theme you’ll only have to stick with it for a week and then we’ll be onto Thanksgiving.
The picture in this entry was taken of Rachel with her brothers about a year ago.
To everyone offering to help with the 5k, thank you so much! I will definitely be calling on all of you to help and I really appreciate the offers!!!!!!
Thinking of dropping the candle prices to $10 as a few people gasped at the price. I’d rather sell more and raise more research money than hold my head high and refuse to bend. What do you think? Is $10 a better price?Read More
I’ve stayed up until nearly 2am to put this blog together and make it look good enough to put Rachel’s name on it. It’s kind of hard for me to stay on top of everything when the children are awake, especially when Rach is home.
Not everyone who will read this knows about us so I’ll quickly explain that we are a family of 6 that lives in the Boston suburbs with 4 great kids. Rachel is 10 and has (suffers from (I hate that term)) Juvenile Batten Disease which is very rare and you can either read more about it here or go directly to www.bdsra.org and the Batten Disease Support & Research Association will be able to educate you better than I can. Our other children are Julie (6), London (5) and Boston (4) and they are truly the best kids (wish the food bill were a little cheaper but other than that… lol).
In the last year I (Rachel’s Mom) have been working on getting Rachel’s educational and medical needs met and more recently have done some fund-raising work. We hosted a Lemonade stand on the fourth of July, had a table at Endless Summer and have started selling candles at Batten Candles. The next major fund-raiser we are working on is a 5k Race / Walk in our beautiful seaside Hull, Massachusetts town (May 2011).
If you have any fund-raising ideas for Batten Disease Research, please contact us (and thank you)!Read More