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
Alright, these road trip plans are coming together and we’ve added some new items to the bucket list. We are traveling from Boston MA through Colorado Springs CO to Eureka CA to Seattle WA and back to Boston via Bloomington, MN and Niagra Falls (NY). Take a look at our bucket list and let me know if you can think of any MUST SEE/TOUCH along our route.
This might be Rachel’s last BIG road trip so I really want to make it special. Batten Disease is slowly stealing my girl and I’m not about to have her miss out.
John will be flying out on the morning of July 4th to meet us in Seattle to enjoy a few days with my xhusband and his family (Rachel’s twin sisters) and then we’ll head back.
I’ve also found someone to do the minivan lettering (thank you Kerri @ Mayo Designs) “Batten Disease Road Trip for a Cure” and reference this website to try and get the full $7206 for Batten Disease research ($1 per mile).
If you can donate please click the link on the right that says “donate” or you can mail a check to: Team Rachel, 35 N Street, Hull MA 02045. You can also bring donations to The Good Geeks @ 667 Nantasket Avenue in Hull.
Thank you! <3Read 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
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.Read More