The First Post

Posted by in (Team) Rachel & Batten Disease, Boston, Julie, London

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)!

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Trip of a Lifetime Version 1.1

Posted by in (Team) Rachel & Batten Disease, Bucket List

I’d say version 2.0 (since we took a trip in August) but I feel more comfortable adding a sub version to this trip since its still 2010 (and version 2.0 is planned for January 2011).

I’m taking the kids back to Colorado next month for a week and can’t wait. We’re going to have an early Turkey Day with the best of friends and if we’re lucky we’ll get to see some snow. Also hoping to find somewhere that has snow tubing already going by then but won’t mention it to the kids until I get some good news.

And we’re also hoping that the Flying W will have already started up their Christmas Show by then. Rachel loves their music.

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Who would have

Posted by in (Team) Rachel & Batten Disease

Who would have, COULD have conjured up this situation. Not only is Rachel ill and declining, we have been told that she is eventually going to die and there is nothing that we can do. No treatment, no trials, no plans of attack or courses of action.

As a parent it is an unimaginable detour in life and I don’t think you can really grasp the what this is like unless you are a Batten Parent or have a child with a similar diagnosis. Its not like she’ll be lucky enough to get hit by a bus at age 20 and get it over with, she gets the nice long road of losing ability after ability until there is nothing left but death.

There are dozens of books out there about a wide range of diseases and illnesses and how to cope. There are local support groups (which I doubt make it all that much easier) for other major diseases.

Don’t get me wrong. I’m THRILLED that there are so few of us out there but I just wanted to say that we are in an unimaginable situation, one that has little comfort and very few answers. A situation that so many people pray for but those prayers are never answered because our children are still dying.

Possibly pessimistic to say this (its definitely realistic) that there is no hope for Rachel given the complexity and location of Juvenile Batten Disease. I block this feeling out and I am living life but sometimes it just KILLS me to say that there is literally nothing that I can do to save my child. I’ll raise money towards research for the rest of my days but nothing being able to save my child, my daughter…. well, it just kills me.

Feel free to read and not reply to this. The traffic on this blog is very high but not reflective in my (much appreciated) comments. I guess if I were in your shoes I wouldn’t know what to say either.

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Batten Disease Fundraiser

Posted by in (Team) Rachel & Batten Disease

We didn’t get too many good pictures from the “Our Promise to Nicholas” Fundraiser last weekend because it was at night and I was chasing kids but I did get three pictures.

Saylor and Julie decorating pumpkins at the Batten Disease Fundraiser

Rachel decorating pumpkins at the Batten Disease Fundraiser

Rachel decorating pumpkins at the Batten Disease Fundraiser

Boston (Buzz) and London) decorating pumpkins at the Batten Disease Fundraiser

It was freezing!!!!!!

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Sunday is for Chocolate

Posted by in (Team) Rachel & Batten Disease

Today is Sunday and I just pulled the emergency chocolate handle and my wonderful husband ran to the store for some chocolate. We had some girls spend the night and took them back a little before lunch then we went to my parents place for dinner. We have so much to do on the house before the winter comes, I’m tired from getting up early to do a charity walk and broken hearted watching Rachel struggle. Today has been a harder than normal day for her.

If you pull the emergency chocolate handle in our house you get a bar of chocolate. I am pretty sure there is an emergency nap handle but I’m one of those people who wake up insufferably grouchy if allowed to nap.

Registered a new domain for Rachel today and our future fundraising efforts and am so excited about that! I’ll post more when I’ve got something tangible to show.

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Halloween Candle Special

Posted by in (Team) Rachel & Batten Disease

Buy 3 candles and get the 4th free! Use coupon code “freecandle” during checkout to redeem. We’ve upgraded our Pumpkin Pie scent to something more true to the actual pie and we know you’ll be pleased.

Visit www.battencandles.com to order online. Thank you!

All proceeds are donated to the Batten Disease Support & Research Association towards Batten Disease Research.

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Who Am I? (written in 1990, age 12)

Posted by in Historial, Kat

Who Am I?
I’m Katy Muir. I live on 336 Hurlbutt Street in Wilton, Connecticut. My Mother, my Father and I raise cats. I have three brothers: Adrian 20, Clive 18 and Chris 16. I am 12 years old. I go to Cider Mill and I am in the sixth grade. My teachers are Miss English, Mrs Kent and Mr Watt. I like to ice skate and raise cats. After school on Tuesday I go to sixth dimension. After school on Wednesdays & Fridays I go to Wilton Meadows, a Nursing Home. On Thursdays I go to Cider Mill Singers. On the weekend I babysit for a various amount of people, I enjoy kids a lot.

If I Could Change The World
If I could change the world it would be a hippy era for about one year. There would be a war on drugs and I would be the first woman president. There would be micro chips you could swallow so you would not have to go to school. Everyone would like everyone. No matter if you are fat or slim, black or white, poor or wealthy or what your race is. Every country would like each other and you would be free.

What I Want To Be When I Grow Up
When I grow up I want to be a chef. this is because my whole family (including me) are good cooks. My oldest brother Adrian and my Mom have taught me a lot of things about food. The chef’s cooking school of my choice is called Culinary Institute of America in New York. I would like to open my own restaurant. It will be in Chatham, Massachusetts on the main street near the church. It would be called Le cuisine even though their would only be some French food on the menu. My favorite dish is called Le’ Apples France’ and it is diced wet apples with a little cinnamon and ginger and raisins. I learned to make it a couple of years ago.

I Think My Parents
I think my parents are very nice people. They are very understanding and always listen to my side. If I do something wrong they will probably give me a lecture and help me correct my mistakes. My Dad works at Perkin Elmer. My Dad is also very smart because if I ask him something he will always know the answer. If I don’t understand something he will help me understand it. My Mom works for William Ravies and like my father she is very hard working. My Mother, my Father and I are the ones who really raise the cats.

People Hurt My Feelings Most By
People can hurt my feelings with they make jokes about my weight. Everyday I hear cracks like “Were your relatives stuck under the ice” or “Can I have the autograph of Porky Pig” or “How is Elsie the world’s most famous cow?” or “Make any earthquakes recently?” I do not like being overweight but if people don’t like me for who I am, don’t make fun of me. Whenever I get a grade everyone assumes its bad even though it might be good.

I Am Proud When
I am proud when I get a good grade on a paper that I have worked hard on, especially Social Studies. Social Studies is my worst subject even though it is my favorite. When I do a whole folder on Rome with a lot of essay questions and I receive an A- I am very proud. I am also very proud when I go to Wilton Meadows – a nursing home in Wilton. I am proud when a resident says to another resident “Isn’t she sweet” or “Isn’t she cute” or “Isn’t she nice.” That makes me feel very proud.

On Vacation I Like To
On vacation I like to go to Cape Cod, Massachusetts. My family has a house on Cape Cod in Chatham. I love to go to the beach and build the “Crem de la crem” of a castle with a mote. I always put seashells on the top. I love to go to the flea market because I normally buy something their. At night I go to the drive in movies and see a double feature with my parents. On the way home from Cape Cod I like to go to the water slides till 5 then drive home for 4 hours.

The Happiest Day Of My Life
The happiest day of my life was when I saw a kitten being born for the first time. It was really funny before the kittens were born because the mother Sheba could not reach her feet. Sheba looked like she was about to explode. When Sheba was in labor and about to have a kitten you could tell because her stomach was going in and out a lot. When the kitten came out and the mother cut the cord the kitten was all wet. About 3 hours later the coat was softer. About 3 weeks later the eyes started opening and the color started coming.

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Batten Candles raises money!

Posted by in (Team) Rachel & Batten Disease

Vanilla (white), Macintosh Apple (red) and Apple Pie (brown). No labels or tags but I wanted to add a new image into this entry.

I’m proud to say that The Good Geeks have footed the bill for the supplies so that Batten Candles could get a running start. We raised $500 in the month of September and are looking to match that in the month of October.

If you would like to buy a candle but are having trouble ordering online (international?) please email me and we can work something out. I can ship USPS or UPS (we have accounts with both).

Please oh please buy a candle and help me alleviate the space issues in my kitchen. www.battencandles.com

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Happy 5th Birthday, London

Posted by in Birthday, London

My little introvert who reminds me of his Daddy. You have curls most women (including your mother) would pay good money for. We love you and won’t give up on making you play outside. You’ll probably end up owning a large software development firm and will create and indoor “outside.” Love you so much and anytime you want cookies just call me up and I’ll ship ’em.

London Jack opening his new sheets (his request) with Saylor Moon looking on. They'd make some cute kids in about 20 years...

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Happy 4th Birthday, Boston

Posted by in Birthday, Boston

You are such a special, obnoxious, wonderful, loving little guy. I don’t think the world will ever be prepared for you to join it as an adult and I constantly daydream about what you will accomplish. I’m so proud of you.

Boston open his Toy Story 3 presents on his birthday

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