A long overdue thank you

Posted by Kat in Life

I just sent this little letter into the Hull Times and I can’t wait to see it published:

Kind words for Granny

Posted by Kat in Memories

Grandma Daniel or “Granny D” as I liked to call her, was a special lady who was admired by all who knew her.   She set an example with her kindness, charisma, hospitality, and work ethic that all others could only hope to achieve.  She opened up her home to us any time that we could come to visit, and always made sure that you never went without pocket money during your stay.  I will miss visiting with Granny in her “museum” in her front parlor.  My son Ryan and I often talk about how nice it was to visit with “Great Granny” when we stayed with her almost 2 years ago.   She was a wonderful lady, and will be truly missed.
-Christopher Muir and family.

Dear Granny D.  I want to thank you for making and raising such a great daughter who is my Mom, Eileen.  Eileen has gone on to have 4 of her own children and now has 9 grandchildren.  Eileen has bailed all four of us out many times when we have needed her, she has helped me tremendously to take care of Rachel who is a very special and sick child and Eileen also has an annoyingly positive outlook which has helped me to cope with the illness from which Rachel suffers.  You can rest easy, Granny, knowing that you have left your mark on this world.  Thank you so much.
With love,  Kat von Tungeln and family from America.

Dear Santa Clause (by Rachel)

Posted by Kat in Batten Disease, Life, Rachel

I would like an American Girl Doll and clothes.
Sewing needle plus wool to make things.
A new collar and leash for Boise.
For my sister, Julie Bean she would like a Mrs Clause outfit because she is a girl.
New clothes for my brothers London and Boston.
Make-up for Rachel and Mommy.
Aftershave for Daddy John
New shoes for Granddad
New bed for Great Granny which is comfortable and easy to get out of.
New pair of shoes for Auntie Dorothy and Great Granny.
New pair of eyes for Rachel Eileen von Tungeln.
Rachel wants a new guitar.

Love Rachel

PS  I have been a good girl all year.

(Can’t stop crying reading the part about new eyes)

Rachel Scarecrow Story

Posted by Kat in Life, Rachel

I had a scarecrow and his name was Joe.  One day Joe came to life!  He was a real scarecrow person.  Joe met another scarecrow person named Sophie.  Joe and Sophie both wanted to walk to the ocean.

They called up a Limosine Service to pick them up at the farm.  Farmer Dave gave them some money for their trip.  It took them 3 weeks to get to the beach.  They ran and ran and jumped into the water.  Then a whale ate them.

Rachel made this story up on 10/6/11.  Thanks Tami for writing it down.

Back on track

Posted by Kat in Batten Disease, Life

Rachel is back on prozac and I am seeing more and more of my “normal” Rachel.  She was very difficult at home during her break from that medication and I don’t intend to ever take her off of it again.  Rachel won the Fireman Poster Contest for the entire 5th grade because of the poster that she and Tami made… and won a trip for me and her to ride the fire truck to school.  Fireman Evans was pretty sympathetic to her diagnosis and picked us up first.

Featured Photo:  The picture is me with all of the other winners, Fireman Evans with his daughter Hannah and Rachel (far left, obviously lol).  :)

JJ and Mel

Posted by Kat in Batten Disease, Friends, Kat, Life

My dear BFFs from Colorado Springs sent me a beautiful margarita bouquet yesterday to cheer me up from the rough day I had last week.  I found out that Rachel is #9 of 30 in the study for Cellcept and that the earliest she would be able to start is late spring.  It was expected to everyone but me, I had unacceptable high hopes and felt really let down afterwards (my own fault).  This is what the card said from my dear friends (I’m writing it here to keep for forever and maybe to steal and reuse on someone else one day):

We may be separated by miles,

but your tears do not fall alone.

Your triumphs we celebrate,

Your grief we share,

We love you. xoxxoxoo

- JJ & Melissa

My race speech

Posted by Kat in Batten Disease, Life, road race

I am reposting the “jist” of my speech here for those that were too far to attend or those folks who came but were way in the back…. Here goes:

Hello everyone.

My name is Kat von Tungeln and I am the proud Mother of 4 really great kids:  Rachel is 11 and Julie London and Boston are 7 6 and 5.

About 3 years ago,  and truly looking further back it was  longer than that we noticed Rachel having difficulty with her short term memory and simple activities like planning out getting ready in the morning for kindergarten.  After all was said and done and her symptoms progressed to crazy vision loss (I mean try to imagine your child going blind – it was truly an out of body experience for me) I finally got confirmation of  her terminal diagnosis of Juvenile Batten Disease.  In the most basic terms one of her chromosomes is a teeny teeny tiny bit shorter than it should be and as a result she has the inability to dispose of excess waste material in her brain and is causing Central Nervous System and Brain cell death.  I won’t talk about down the road as my kids are only a few feet away from me but feel free to ask me any questions after you have done the race or email me at any time.

I am so grateful to the International Brotherhood of Electrical Workers Local #104 and to Clean Harbors for becoming Platinum sponsors.  Julie Miller and Liza Collier really came through and thank you to our silver sponsors,  your support has made all of the difference in our success.

I was expecting maybe 100, 125 to register and we have tremendously exceeded the 300 registrant mark.

Thank you to my Mom, Tami and Becca Petrocelli, Janet Donato,  Mary Johnson, Briana Johnson (with one N), Sam Walsh, Jen Duran and my niece Haley for being a tremendous Assistant Race Director.  Thank you to my brother Adrian and dad Andrew for helping get things set-up today, could not have done this without you!

I also want to thank my husband and kids for dealing with my insanity and absence these past couple of weeks. You guys mean the world to me.

This is a very nasty and unforgiving disease and I urge you to research it and share it with your friends because people like me and the families I am about to introduce to you are relying on private fundraisers to give the scientists the funds they need to help kids like Rachel.  At this time I would like to introduce my local Batten Family and then we’ll be ready to roll with this race.

And if any of you Hull parents want me to have an easy to understand, kid friendly talk with your kids…. You know how to reach me.

Thank you so much for joining us today on our journey.

I am forever grateful.  Now lets get ready to go.  On your mark, get set  <AIR HORN>

Here is a picture of Rachel and Granny after the race:

UNBELIEVABLE!!!!!!!

Posted by Kat in Batten Disease, Life

I am tallying the results this morning after passing out from exhaustion yesterday afternoon and we’ve raised over $20,000 with approximately 350 participants.

As a mother I want to sit and hug each and every one of you with tears streaming down my face. I know this won’t save my daughter but this is exactly what this rare genetic brain disease needs to bring some publicity to it and give the scientists the much needed funding they require to do experiments that will one day save these kids.

As a member of Hull’s community I want to say how proud I am for all of you coming out yesterday: either as a walker, runner, volunteer, sponsor or donor.

I am extremely grateful for everyone’s help, support and hugs. It only took 33 years to turn me into a hugger but I’m not going back

Thank you especially to my Mom and Dad, my brother Adrian for being my delivery man, to the Durans, the Johnsons, the Donatos the Petrocellis, Sam Walsh, Sue Bradley, Lulu, The St Gelais + Kelsey, the Rotary Club, Steve, Cath Morgan, Walter and The Broders. Extra special thanks to my neiece Haley. She is simply another version of myself and got all TYPE A on this race. Without our race committee this race would never have caught on fire like it did. And Liza Collier of Clean Harbors and Julie Miller of IBEW 104 for getting me the Platinum Sponsorships!!!!!!

THANK YOU SO MUCH!

And thank you to my Batten Family for coming out and showing the Town of Hull that Rachel is not the only one!

Getting ready for my speech

Posted by Kat in Batten Disease, Life, road race

I plan to thank Clean Harbors and the IBEW #104 as well as my totally badass Team and everyone for coming out and donating.  And briefly (since I have been told to be brief but precise) I will be mentioning and honoring all of the families who are joining us for race day and the boy in the next town over who died of Juvenile in 2002.  Here is the list:

Curran:  Fran & Glen of Duxbury with college age twin daughters who are unaffected and 19yo Nick (JNCL)

Daniak:  Heather and Chris of NH with son Nicholas (LINCL) and William (unaffected). 

Habershaw:  Preston Habershaw passed away from JNCL in 2002 in Hingham, MA (next town over)

Landers:  Nancy and Zia Landers of Cape Cod.  Nancy’s son (Zia’s brother) Barry passed away (LINCL) in 1998.

Montville:  Jessica of Worcester with daughter Nora (LINCL) and unaffected children Thomas & Alicia. 

Stancombe:  Maria & Mike of NH with affected (LINCL) daughter Gracie and son William died in 2010.

St Gelais:  Moe & Jean of Westport MA with daughters Kelsey & Kate, affected (JNCL) sons Jordan and Zachary.

von Tungeln:  Kat and John of Hull with children Julie, London and Boston and affected (JNCL) Rachel (11).

Alice’s Attic becomes a Silver Sponsor!

Posted by Kat in Life

Thank you so much to Laura and Jillian for sponsoring Team Rachel through Alice’s Attic.  We love you guys and appreciate your support of our family and of this race.  :)

Website: http://alicesatticonline.blogspot.com/