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TPD
Journals/Guests
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Wed, 14 Sep 2005
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 Dylan/EB Project
Welcome to Dylan's journal. We hope you enjoy
reading about his journey. Please do not post
comments or questions here. They should be
directed to our Guest Book or in an email to
travelingpez@hotmail.com .
Thank you!
-TPD Staff
Posted 17:29
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36 comments
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I'm on my way!
Hi everyone! I'm Dylan. I was taken to the 2nd
annual Butterfly Brunch for Grace Peshkur. There
were so many people there! I got to meet Lynn
Anderson and she is taking me to start my journey
around the world! Lynn is the President of the
EBMRF.---I also got to meet the President of
DebRA too! Suzanne Cohen. The event was the
first time these two beautiful ladies met! I'll
be visiting Suzanne next!---Well, I'll be writing
more when I can. Bon Voyage to me! Woo hoo!
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Dylan goes to California!
Hello friends! Chris has already introduced me
as Dylan. I am a PEZ butterfly and named after a
young man with EB (epidermolysis bullosa). A
butterfly was chosen because EB children have
skin as sensitive as butterflies’ wings.----I am
having a great time with Lynn and Gary Anderson
who founded the EB Medical Research Foundation.
After the Butterfly Ball, we spent a day
traveling on East Long Island enjoying the scenic
water views. We then rushed to Phoenix, Arizona—
my first airplane ride! What a change from Long
Island to Phoenix---from water to desert. I
learned to like the red plateaus of the desert.
I met new friends with the Forever Young
Foundation--Steve Young’s charity group. They
have been giving great support to EB children for
many years. The trip was not all work. We went
to a Coyote Hockey game, to Steve’s favorite
restaurant (Honey Bear’s) for BBQ and race car
driving. I must admit that I was a little
nervous riding at the speeds Lynn Anderson
drives!----Since Phoenix, I have visited
Carlsbad, San Francisco, Berkeley, and Oakland—
all in California. I am including pictures so
that you can see some of the beautiful places I
have seen—the Golden Gate Bridge, Jack London
Square on the Oakland Marina, and the University
of California in Berkeley. I even rode a cable
car!----Today was a REALLY big day. Steve Young
invited me to join EB children at the San
Francisco 49er football game! Steve’s number was
retired at the half-time ceremony because he is
now a member of the NFL Hall of Fame. What an
exciting day!----I have loved California, but
must move on. I am flying back to New York today
to visit with Suzanne Cohen, the CEO of DebRA.
Life is wonderful!
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My visit to PEZ Candy Inc.
Today I visited with the folks at the PEZ
headquarters in Orange, Connecticut. I toured
the factory with Mr. Bud Danberg, PEZ's Vice
President of Marketing. Bud told me about how
PEZ was founded and then showed us (Susie and me)
how PEZ is made.---The candy tablets that fit
nicely into my belly come streaming out of big
pressing machines in many flavors. They are made
mostly of sugar and then mixed with different
flavors before being pressed into that famous PEZ
brick shape that everyone loves.---I saw many
people of all shapes, sizes and colors, just like
PEZ dispensers like me. They were gently putting
candy in wrappers using complicated machines.
Then putting the wrapped candy with many
different dispensers, some like me, some like
Santa Claus and many more, into bags and onto
cards.---Later they were packed into boxes of all
shapes and sizes. Bud told us they were on their
way to millions of children and even grown-ups
all around America. I was especially happy to
hear that everyone loves PEZ dispensers like me.
I hope more people buy PEZ dispensers and I
continue to travel to many more great places like
PEZ headquarters so people will learn more about
EB. My best buddy Dylan Harris and all the other
children like him who live life like butterflies
really need to know that we are all there to
help. Just like all those people in the PEZ
factory who gently help all those PEZ dispensers
like me find friends like Dylan.---During my
visit I also got a chance to meet the PEZident.
He had gray hair and a round belly. No he did
not have a beard but I think he likes to help
Santa Claus when ever he can.---There was so much
to see and I wondered how much fun it is to visit
the place where people go just to make kids smile
just like I make my buddy Dylan smile.---One last
thing the PEZident whispered to me before I left
for my next stop on my long trip around the
world. He said, "As long as there are children in
the world there will always be fun. As long as
there is fun, there is love, as long as there is
love we can conquer any ilness. Even EB."---I
think he meant it. He must know about fun, he
makes PEZ Candy and dispensers like me.---I hope
one day I can bring my buddy Dylan Harris and his
friends to visit PEZ. A little fun never hurts.
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Thanksgiving with Dorothe
11/26/2005-----I am back in New York (Long Island
exactly) at Dorothe’s house, who is Chris’
mother. Susie (my friend from Breast Cancer
Awareness) was here with Chris’ brother Dan, who
is really cool and Dorothe made another Turkey
dinner for the two of us. We had a lot of fun,
good thing that my body is hard plastic, or my
waistline would have been expanded several
inches.--- I have so much fun traveling and
meeting so many wonderful and kind people, that I
forget sometimes the purpose for all of this, to
bring awareness to EB and raise money for
research to find a cure for this terrible
disease. When the granddaughter of Dorothe’s co-
worker was born with a severe case of EB, nobody
in the Hospital knew what was wrong with her.
Some progress has been made since then, but not
enough. TPD has brought EB to the PEZ community
and I am proud to be chosen to spread the word
around the country, even overseas. One day, when
I will get auctioned off, I can retire on some
collector’s shelf, but in the meantime there is
still a lot of traveling to be done thanks to all
of you generous and kind people. PEZ collector or
not, everybody has fun having me as well as Susie
for a few days. It might bring back some
childhood memories and we get to do something we
wouldn’t do otherwise, like go to a special
monument in your town and have a picture taken.
Thank you sincerely for all your help, I know
there is much more yet to come.---Soon I will
report from Germany, getting a little closer to
my roots in Austria. I am very exited.
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Dylan goes to DebRA!!!
Hello! Dylan had a whirlwind visit to New York
City as a guest of the DebRA of America staff.
Dylan got to see first hand the work of this non-
profit organization that helps thousands of
families with EB through it's programs and
services and support of EB research. He even got
to meet the DebRA Nurse Educator Madeline Weiner,
who provides day-to-day support and information
to people with EB, their loved ones and medical
professionals.---Dylan was whisked away to see
many of the best sights in the city during the
Holiday Season. He visited the Empire State
Building, fashionable Fifth Avenue, and Macy's
legendary holiday decorations. While Dylan was
busy sightseeing, he also spread the message of
EB Awareness.---Dylan was excited that so many
places in NYC shared his name, like the Dylan
Hotel in Mid-Town. He learned Dylan's Candy Bar,
owned by Dylan Lauren (designer Ralph Lauren's
daughter) is home to his cousins, $300 crystal
encrusted PEZ dispensers, custom designed by the
Austrian Jeweler, Swavorski.---Before leaving,
Dylan paused at the photograph of tennis champion
Mats Wilander and his son Erik, who has EB
Simplex. The Wilanders, he was told, established
a successful fundraising tennis and golf outing
seven years ago to benefit DebRA. Looking at
Erik, Dylan was reminded of all the people with
EB around the world and his mission to raise EB
awareness and funding. He then took off for his
next stop. Germany!
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Dylan In Munich, Germany
12/11/05-----Now I traveled to Germany to visit
Chris' relatives in Tutzing, a small town south
of Munich, the capitol of Bavaria. I only stayed
5 days, so I had to hurry to see all peoples and
to have a look at several "Christkindl-Markte".
These are small markets almost every town makes
in the time before Christmas. At these markets
everything is sold, from toys, to Christmas
ornaments, even clothing and a lot to eat and
drink. There are also little places where
Kindergardens or wellfare "companies" sell
homemade cookies or ornament to earn money to
donate it to several organizations. And those
markets are a place for people to meet and have a
talk.---In Munich is one of the biggest
Christkind-Markt" and what a surprise, I met
Susie!!! We wenton a sightseeing tour to see all
the famous places like "Frauenkirche", "Rathaus"
and "Stachus". At the "Stachus", also
named "Karlsplatz" is a ice parlour in the winter
time, almost like Rockefeller Center in New York
City. We watched the people having fun on the
ice.---We had a good time, even if the weather
was pretty cold, but most of the time the sun was
shining. I'm really looking forward to my next
trip to Germany because it was a great
experience. Next time I'll come in the summer to
visit the "Biergarten" or in autumn to
the "Oktoberfest".
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Dylan's Christmas in Sandy Hook, KY
Merry Christmas! Well, it may be a little after
Christmas, but I still have the spirit for it!
The holiday was WONDERFUL in Sandy Hook, though
sadly there wasn't any snow to build a snowman,
or even make a Pez Angel! We (Susie, the BCA
Traveling Pez, and I) spent plenty of time in
front of the Christmas tree, admiring all the
beautifully wrapped presents. My favorite part
of all, though, was helping pack the boxes for
Shoebox Christmas. Those kids will sure be
happy when they open them! We also got to help
make a ginger bread house. We wanted to live
inside, but they wouldn't let us...they said
we'd get sticky, or some such nonsense! Another
highlight of Christmas was the family get
together with Jennie's family. She has a four-
year-old cousin named Connor, who took on the
big job of opening EVERYONE's presents for them,
and then announcing to them what they had
received. When he opened up one for Betty
(Jennie's mom), he exclaimed "Great Betty! You
got a phone book and a movie!" She had really
gotten a book and a cd! Kids are so funny.
Well, soon I'll be off with Jennie to visit and
spend New Years in Japan with her sister!
Okinawa, here I come!
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New Years in Okinawa, Japan
We landed in Okinawa on December 27, 2005. Man,
what a long flight! First it was 2 hours from
Lexington, KY to Dallas/Ft. Worth, TX, then 14
hours from Texas to Osaka, Japan, then another 2
hours from Osaka to Okinawa! I sure was worn
out! We visited so many places! We visited a
HUGE Buddah statue, a giant cave, saw a
traditional Ryukyu song and dance, Cape Kyan
(The southern-most tip of the island), a
pineapple factory, and went exploring on some of
the surrounding islands. The beach was
definitely one of my favorite places...that's
where we celebrated New Years! How awesome is
that!?! You'll have to check out the pictures
of Susie and I in front of a traditional
Japanese New Year's decoration. The trip was so
much fun, but was just too short. Hopefully we
can go visit again!
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Off to work I go!
Today I have to go to work at Apple Honda. That
does not sound like fun, but I don’t get to
choose where I go, they just send me. They are
very busy at Apple Honda. Everyone is always
running around, I had no time to rest! I got to
go on a test drive in a Honda (when I can drive
on my own I want to buy a Honda CRV just like the
one I went for a ride in.) It is a good thing I
wore my seat belt because they must have been
driving 100 MPH!------It is now after lunch and
we had pizza. I am going to go work on some
cars. I get to get full of grease! I love to get
dirty. I just hope the techs won’t get mad at me
because I never worked on a car before.------Now
the day is almost over and I am going to meet all
the ladies in the office. They do all the work
behind the scenes. They were all excited to meet
me and learn about EB. I thanked them for the
large donation they made in hopes of some relief
for all my Butterfly friends.------Well, going to
work was fun after all. I am very tired though.
Every one at Apple Honda is very nice.------I
think I go to see Dylan next after I leave Apple
Honda (that is the boy I am named after) I hear
he is very cute. I can’t wait to go have some
fun and see all of his PEZ. Rumor has it that he
has over 200 pez in his collection and that is a
lot for a two year old! Well, I will keep you
posted.------Bye bye for now. Can’t wait to talk
to all of you again!
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I met the boy who I was named after!
I got to go see Dylan Harris! WOW that boy has a
lot of PEZ! The first thing Dylan did with me
was show me all of his PEZ dispensers. I think
he has over 250. Dylan told my the story how he
started collecting pez and that most of his PEZ
were given to him as gifts from people that he
does not even know, he cannot wait to meet some
of them on April 1st at a PEZ convention in
Connecticut. I was happy to see some of my
family, Dylan has all of the BUGZ. I hung out
with them most of the time, it was nice to be
able to share our memories of how we were made
and where we have traveled before ending up here
with Dylan. Dylan has EB so he does not play as
rough as a normal boy his age. Most of the time
we played with his trucks and he even let me
drive some of them. Dylan loves to help his
mommy cook. We made pasta one night. After he
filled his tummy he emptied mine and ate a whole
1/2 roll of PEZ candy! After that I watched as
his mommy gave him his nightly bandage change.
He almost started to cry but he held it in like a
big boy and he's only 2! He looked at me and
kept smiling the whole time. The best part about
my stay with Dylan was that I got to see a little
boy enjoy his PEZ dispensers. I got to help him
pick out a different one every night so he can
sleep with one. He even chose me to sleep with
him one night! Well, I have to get packing and
then I have to get some rest because I will be
going on my next trip soon. I can't wait to see
where I will be next. Talk to you guys soon!!!!!


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GREEN BAY!!!
3/3/06---WOW! What a fast trip! I was
overnighted to Bryan! Susie is here, I sure get
to see her a lot. Bryan's Mom, Debbie, was quite
interested in my project. We had a long talk.----
--3/4/06---BREEN BAY PEZ GATHERING!!! I was with
Susie most of the day while we met everyone that
came in. Before the auction, Bryan walked us
around and introduced us to more people. I
helped raise $110 for Jessica & Dylan with the
PEZ Quilt Raffle. Congrats Mary Steffen! Bryan
said that he raised $578 for Special Olympics in
the auction. We enjoyed a nice dinner with The
Brumett's, Kraft's and Zellmer's. We had a great
day!
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A few days with my friend Jacob Lewis!
3/7/06---I made another trip! I'm now being
hosted by Jacob. Bryan and Tammy Lewis' son. He
took me to Daycare today with Susie. What fun!
They wouldn't let us stay but we met all of his
friends and teachers.------3/11/06---We took a
long car ride to Wittenburg where the Lewis'
picked out a new puppy! I LOVE puppies! She is
so calm that she even posed for a picture. Jacob
was speachless with the sight of so many dogs!
Pebbles is really nice and I hope I get to see
her again!------3/12/06---I visited Lambeau
Field, the home of the Green Bay Packers. It was
really BIG!!! That Vince Lombardi was quite
big! I hope someday I can come back for a game.
I'm off tomorrow to see Dwight Lutsko. I hear
he's a really fun guy! Thanks for the fun Jacob!
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Dylan and Dwight!
3/17/06---Got unpacked at Dwight and Tina
Lutsko's house, traveling with Suzie is fun.
Dwight got us T-shirts, mine is from Adrian and
slightly big on me. But I love it. Suzie got one
too. Check out Suzie's book, I hope I don't
repeat what she said. I met a couple of my
cousins. Dwight is sending one to Bryan Lewis to
say thanks for hosting us. He is also sending one
to Chris to autograph and return to Dwight's
Collection. Dwight said he donated me and 4 of
my brothers and sisters to start us off on
travels, it was a great to return to his house
and see all my old friends and meet many new
friends. We are being loaded up again, off or
back to Chris M. Can't wait to see what the
PHOTM for March 06, looks like now. I hope he
looks the same. See our pics - that's Suzie and
mine in the log. Adrian is great. Slot machines
are fun, especially when Dwight pays off for the
jackpot - More $$$$ for EB-Epidermolysis Bullosa,
What a great cause. Off to CN convention!
Thanks Again to Dwight PHOTM 905 and Tina Lutsko!
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Meeting Chris' Neighbor
Hi everyone! I spent the night at a sleepover at
Chris' neighbor, Roseann's house. Although it
rained yeaterday, this morning we all woke up to
bright blue skies and sunshine! It's usually
pretty quiet around here on the east of Long
Island, but Roseann's home is undergoing major
structural renovations right now. It's a little
dusty and noisy. Roseann's family consists of
her cat, Ranger, beagle named Jack and a white
shepherd named Natasha. They all welcomed me and
are planning on telling their human friends about
me too! Well, I'll have more to write about on
my next stop, see you soon!
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Another PEZ Convention!
Wow! I'm back with my buddy Chris! It's really
nice to see him again! He's packing everything
he'll need to bring to the North East PEZ
Collectors Gathering (8th Annual!). I'm going
with him and I'll be working the whole time.
We're raffling off a tour of the PEZ factory and
one of my brothers too. He's been packaged with
a Golden Ticket inside the package. The Golden
Ticketg is an invitation to the PEZ Factory! The
tour is called The Butterfly Tour for people with
EB! I wonder who'll win? We're also helping my
best friend and namesake Dylan this weekend with
another raffle for the 2006 PEZ Quilt!------Well,
here we are! I recognize many of the people here
and they are all excited to see me. I'm taking
many pictures!------My next stop sounds
exciting. Savannah, GA! I hear it's a very
pretty city. I hear I'm going to be in a movie
down there too! I'll write more when I'm there.
Bye for now!
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I'm gonna be a star!
4/18/06---I'm in Savannah, GA. The buildings are
so old here! I'm visiting with the people who
are making PEZheads The Movie! Yesterday they
took me on a walking tour of historic downtown.
And later in the day, a guy with a bald head and
a weird beard talked about us on camera. It was
cool seeing the behind the scenes stuff for a
movie. Oh, and the funny beard guy is named
Chris.---Today Chris brought us to class with
him. I forgot to mention that Susie is here with
me. We are learning all about photography at
school today. In a couple of hours, I'll be on
my way to someone else. I can't stay still for
long!---Adios, Dylan
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A visit with The Jordans!
4/23---I arrived at the Jordan's house in
Kearney, MO. I felt a little neglected because
the mom there (her name is Chris) was sick with
pneumonia. It is OK though because I understand
about sickness and I try to help make sure that
others understand about it, too! Especially EB!---
---4/25---I was supposed to be on my way to see
someone else, but I haven't gotten to have any
fun here yet. The Jordan mom did some emailing
with Chris M. and he said I could stay till next
week! Yeah!! Kyle has several places he is going
to take me. Chris Jordan, the mom, is doing lots
better and only uses the breathing machine once
or twice a day now.------4/27---Kyle, his sister
Bethany and his Grandma Judy took me and Peter
Pez to pottery class in Excelsior Springs. Peter
Pez was going to be molded and I was going to
watch but Keith, the instructor, wasn't there so
I watched Kyle throw a bowl on the potter's
wheel. It was very messy!------4/29---Wow! What a
busy day! I got to go to UMKC for freshman
orientation. There were lots of new students and
the campus was really pretty. There are lots of
statues and I got to pose for pictures with them.
The Henry W. Bloch School of business statue is
sort of green, bet the H & R Bloch guy must do
great business! I went to a haunted house - the
Epperson House. It was on "Unsolved Mysteries" -
but I didn't get to see the ghost.----------I
went to the Toy and Miniature Museum and got to
get a picture with their Teddy Bear mascot. Then
I went to the Nelson Atkins Museum of Art. They
have giant shuttlecocks in the grass. I'm real
glad I didn't see the players or the badmitton
rackets! I really liked "The Thinker". I'm pretty
sure he was trying to think of a cure for EB
while I sat beside him. I went to the Russell
Stover headquarters and then to a Russell Stover
Outlet a few blocks away. They had PEZ! Then we
went to the Plaza - lots of stores and statues
and fountains and funny people!----------Next we
drove a long ways to go to a Super Flea Market.
We got rear ended on the way (no one was hurt)
but by the time the police came and made a
report, it was too late to go to the Flea Market.
The lady that hit us had insurance and will pay
to fix the Jordan's car.---4/30------Today we
went to the Flea Market. It was huge and there
was lots of JUNK! We looked everywhere to find
PEZ but the closest thing we found was a Pikachu
Bandai "wannabe" PEZ! Next we went to the Jesse
James Farm and Museum in Kearney. The Jordan's
house is just behind where the James family
lived. I bet Jesse James played on the Jordan's
land when he was a boy.---5/1
------Well, I'm getting all packed up and ready
to head back to NY. I'm going to see Cinders and
she's going to take me back to Savannah! I'm so
lucky to get to go so many places!------Chris,
Kyle and Bethany Jordan
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Dylan meets Pezscrapper!!!
5/4/06---I'm in Oxyford, NY now with Cindy
(Pezscrapper) and her husband. They are getting
ready to leave soon to go to Savannah, GA. They
are going to their 1st. grandchild's 1st.
birthday party. I get to go with them. I was just
in Savannah with Chris Skeene. It was fun with
him, who knows maybe I'll see him someplace
(LOL). I'm gonna stay in a hotel someplace near
Charlotte, NC, then on to good 'ol Savannah. I
was greeted by Cindy's big cat Little Miss. She
gave me a big hug and protected me from all the
birds! Prrrrr! You can see a photo of us in my
photo album.
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Dylan's visit with Cindy was cut short : (
The next day, Cindy got ill and had to address
the situation. We're VERY relieved and happy to
say that she is doing much better and Dylan will
return for some fun at Cindy's home in the
future.---Cindy, you are a very special member of
TPD as most people already know. Without you
there are some very important things that would
not have occured for TPD. Stay the course
SWEETHEART!!!
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Orange County Chopper
Wow! I got to spend a day with Paul Jr. and
Mikey from Orange County Chopper. They just
finished building a PEZ bike! I've seen them on
the American Chopper television show and always
wanted to meet them! Too bad Paul Sr. was away
the day I came by. Susie was there too! These
guys showed us a great time! Thanks OCC!!!
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Dylan and Lacee The Butterfly
May 20, 2006...Today I arrived at the Ryan home.
They live in Plainfield, IL. Boy, was I glad to
get out of that box and stretch my legs and
wiggle my toes! I introduced myself to Lori, John
& Megan. They were very happy to see me! Lori
said she had been waiting a long time to meet me.
She wanted to thank me for helping TPD raise
money & awareness for EB. Lori has Junctional EB.
She had lots of bandages on her feet and legs. I
could tell she was in pain, but she smiled at me
and told me we were going to have a fun
time!..... May 21, 2006...Today I went on a ride
with Megan. She went to Chicago with a friend of
hers. They took me to a place called Millenium
Park. They had lots of pretty fountains and
gardens there. They had this great big sculpture
all done in mirrors. It was called "The Bean".
Why? Because it looked like a humongus bean! It
was cool! Megan also showed me where the Art
Institute was. They had lions guarding the front
of the building! Megan told me not to be scared
because they weren't real lions. Thank
goodness!!.....May 22, 2006...Today Lori told me
a little more about EB. She said her body lacks
the gene that holds the layers of her skin
together. Anywhere on her body where there is
pressure or friction can cause a blister. Then
the blister usually opens up into a large open
sore that may never heal. Lori has to take a bath
with bleach every morning to help control
infection in her sores. Then she has to use
special bandages and ointments to cover all of
the sores. It takes her over an hour to bathe and
bandage each morning. Lori showed me all of the
bandages she uses. WOW!! I couldn't believe she
needs so many! She said they're very expensive,
too. Lori changes some of the bandages throughout
the day and then again at night she takes all of
her bandages off and uses a special liquid that
has an antibiotic in it. Lori takes a big syringe
and dribbles this medicine all over her sores
over and over again. Then she has to bandage
everything again before she goes to bed.
Sometimes when Lori's infection is really bad,
she has to have IV antibiotics. Nurses come to
her home and stick her with a needle everyday to
give her the IV. Lori said that EB hurts a lot.
She takes special pills to help ease the pain,
but it never takes the pain away
completely.....May 23, 2006...The Ryans keep
talking about a trip they're going to take. Today
they surprised me with the news. We're all going
to Orange, Connecticut to tour the PEZ factory! I
was sent there just after I was made. That's
where they package the PEZ candy with the PEZ
dispensers. I also went there when TPD visited
with PEZ the first time. Lori said that PEZ has
invited TPD and some people who have EB to meet
them and tour the factory! Lori is very excited
to be going! John and Megan are going, too! Lori
has been very busy packing and preparing for the
trip..... May 24, 2006...Today we leave on our
trip! A limo came to pick us up! I've always
wanted to ride in a limo! I felt just like the
celebrity I am!! We got off at Midway Airport in
Chicago. Lori put me in her purse instead of her
suitcase so I could have a window seat on the
plane. It was fun! I even got a Southwest
Airlines set of wings!.....May 25, 2006...Today
is the big day! I'm so excited to be seeing Laura
& Chris again! After we meet with the nice people
at PEZ, I'll be going with Suzanne Cohen,
Executive Director of DebRA. She will be taking
me along with her to the Patient Care Conference
in Nashville, TN. This is a conference for all
people who have EB. It's a great way for them to
meet others who are battling the same demon they
are. Lori had the biggest smile on her face as
she entered the PEZ factory! She whispered to me
later that her feet and legs didn't hurt once the
whole time she was inside the factory. That's
what PEZ and the nice people at PEZ can do for
you!! It makes people smile and forget their
troubles for awhile.

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The Butterfly Tour
May 26, 2006---Lori brought me on a plane from
Chicago to Connecticut and then she brought me to
the PEZ factory! I was here before so I was even
more excited this time. I knew what was in
store! Besides, I was going to meet more
Butterflies! The Butterflies I got to meet were
Kristin Evans, Robert Twible, Julieann Morabito,
Kathy Lariviere and her brother Mike. I also got
to meet some people in their families too.
Suzanne Cohen the CEO of DebRA and a friend of
hers joined us too! Of course Chris and Laura
were there since they put the whole tour
together. A very nice man named George Guertin
was there too. He's the man who won a spot on
this tour on Ebay. We were greeted by the
executives of PEZ outside. There was Joseph
Vittoria (The PEZident), Peter Vandall, Mark
Morrissey, the beautiful Lynn Garrand and the oh
so pretty Heather Iafrate. They were as excited
as me!-----We were waiting for Robert to arrive
and we were invited into the lobby. We posed for
pictures and had some great laughs. When Robert
arrived I gave him his Golden Ticket and we were
all set to go explore the factory and learn how
PEZ candy is made.-----Afterwards we made our way
back to the lobby area and the great people at
PEZ had gifts for everyone! These people are
sweeter than the candy they make! Lori had some
very nice gifts too for everyone.-----There
wasn't a dry eye in the house when George gave
Lori a very special gift. He knew she was the
only Butterfly on the tour that collects PEZ
dispensers. He also knew her dream dispenser is
the Red Haired Nurse from the PEZ PALS series of
the 1970's. He laid one in her lap! This is a
very expensive and hard to find piece! What a
guy!-----I was handed off to Suzanne Cohen and
she'll be bringing me to Nashville, Tennessee so
I can meet up with a friend named Gena. Gena is
going to show me around the Patient Care
Conference where there'll be plenty of
Butterflies to meet!
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Patient Care Conference
6/3/06---Today, Suzanne Cohen of DebRA of America
introduced me to Gena Gruschovnik and her 12-year-
old daughter, Siena, at the EB Patient Care
Conference in Nashville. Siena was helping out
DebRA at the daycare. I sat in with Gena on
several presentations at the conference,
including “Independent Living for Young Adults,”
presented by Floyd Stewart Jr., who runs the
Center for Independent Living of Middle
Tennessee, a not-for-profit organization
dedicated to advancing the independence of
persons with disabilities. A car accident
rendered Floyd a quadriplegic in 1984 when he was
in his mid-30’s, and he must use a ventilator to
breathe. Yet, he enthusiastically provides peer
counseling and serves as an advocate for
assistive technologies.------Floyd was an
excellent speaker, who repeatedly stressed: “Life
is a journey, you have to be a self-advocate!”
He informed attendees that the word “handicap”
was coined by the expression “hat in your hand,”
from olden times. Floyd spoke with dignity,
often pausing due to the ventilator. He
said, “When you label me, you negate me.” Other
words of advice from Floyd, who went on to obtain
a degree in psychology after the accident and
live independently: “It never dawned on me that I
couldn’t do it. Think about what you can do,
don’t whine about what you can’t. Count your
blessings.” Gena told me that her Mom, Pat
Barbrey, who was diagnosed with RDEB Hallopeau
Siemens, also lived by this maxim.------Floyd is
one of the stars of a PBS documentary, “Freedom
Machines,” which reveals the gap between the
promises of the 1990 “Americans with Disabilities
Act” and the reality for Americans with
disabilities. I was shocked at the things I
learned: While our laws are based on inclusion
and goals for independence, basic cultural
attitudes still have not changed much.
Stigmatization of the disabled must be banished,
and government funding streams must be improved
upon to provide access to training and
technological tools for all disabled persons!-----
-On Saturday evening, I was introduced to Dennise
Joseph of EBMRF, and was overjoyed to see my
friends, Lynn and Gary Anderson of EBMRF, once
again. I accompanied Gena and Siena, Dennise,
Lynn and Gary, and Shirley Jones (grandmother to
the late Jennifer DePrizio, RDEB), to supper at
Nashville restaurant hotspot, The Aquarium.------
Next, the group moseyed over to The Grand Ole
Opry! For those who don’t know, The Grand Ole
Opry is a weekly Saturday night country music
radio program, broadcast live on WSM Radio in
Nashville – the oldest continuous radio program
in the United States, having been broadcast on
WSM since 1925! The program on this particular
Saturday night was “A Tribute to Ray Charles,”
featuring many well-known country/pop stars such
as Ronnie Milsap, Travis Tritt, Vince Gill,
Michael McDonald and, my personal favorite,
Martina McBride! Ray Charles’ songs made a huge
impact on the music world, once again proving
that one person can make a difference!!!--------
6/4/06---After listening attentively to the
conference presentation, “Hope Through Research,”
which revealed the positive results of research
to date, as well as the goals and objectives for
the future of EB research, I headed north with
Gena and Siena to visit Ontario, Canada. We
stayed in Kansas City overnight.------6/5/06---We
continued on our trip to Ontario today, arriving
at the border in the afternoon. I explained my
role to Canadian Border Patrol, and asked for a
photo with them, but unfortunately they are so
worried about security these days that they had
to decline. “Citizenship?” they
asked. “American by birth, New Yawker by the
grace of God!” I answered. “Destination?” “A
CURE for EB of every type!” “Anything to
declare?” “I declare, that bridge looks awfully
high up!”------Well – we made it across the
Ambassador Bridge, North America’s #1
international border crossing over the Detroit
River, and I lived to see another day. I hope to
spend a short time with Gena and Siena, and the
rest of their family, and learn what life is like
in Canada for Gena, an American expatriate with a
Canadian husband------6/7/06---I have been
learning some interesting things about Canada.
For instance: their paper currency doesn’t start
until $5.00 – they have a gold-colored $1.00 coin
unofficially but affectionately dubbed
the “loonie,” bearing images of a loon (well-
known Canadian bird) on one side and Queen
Elizabeth II (well-known English bird) on the
other. The loonie is known as a “good luck
charm” in international sports competition,
especially when it’s buried under the ice! About
10 years ago, they developed the “tooney”
or “twonie,” a bi-metallic $2.00 coin with an
outer ring of nickel and a center made of a
copper/aluminum/nickel alloy. A joke refers to
this coin as “The Queen with the Bear Behind” due
to its image of Queen Elizabeth II on one side
and a polar bear on the other, thus hailed as
the “moonie.”------I’ve learned that there is an
organization here called “dEBra Canada,”
dedicated to creating awareness and providing
support for families affected by EB. In Canada,
the Senate and House of Commons has enacted Bill
C-230, “National Epidermolysis Bullosa Awareness
Week.” What this means is that, throughout
Canada, each and every year, this week is set
aside to raise awareness, and promote research
and development toward treatment and a cure for
EB.------Many of you may know, Gena has been
working with DebRA of America and EBMRF to
promote a similar Bill in the U.S. – S.RES.180,
the Senate version, sponsored by Senator Charles
E. Schumer of New York, has 14 co-sponsors, and
H.RES.335, sponsored by Congressman Timothy H.
Bishop, has 33 co-sponsors.------It is very, very
important for everyone who reads this to ensure
that their senator and congressperson co-sponsor
these Bills. If enough co-sponsors sign on and
illustrate the importance of this legislation,
the committees reviewing the Bills will bring
this issue to a vote. At that point, the EB
community will have the opportunity to attend a
public hearing and give testimony to the need for
this special week. So please, don’t delay –
visit and/or write to your legislators today!
Contact Gena at otm@rogers.com if you need to
know how!------6/8/06---This evening, I will
enjoy some “poutine,” Quebec’s contribution to
Canadian cuisine – french fries and melted fresh
cheese curds, topped with hot gravy! Tomorrow,
off to the golf club Gena manages and in a few
more days I'll be seeing the tower!
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Back with Pezscrapper!!!
June 29th, 2006---Hi Everybody, I'm back in
Oxford, NY again. I almost didn't make it
because of the severe flooding in the area.
Cindy lives on top of a hill so she didn't get
any water damage. I'm off soon to go to a
birthday party for Sienna, Cindy's Niece..It's
Cindy's Husbands BD too today, She said he is
older then dust. Sienna had her picture taken
with "Susie" last year at "The Safety Awareness
Day", Now I get to go to a party with a bunch of
14 year old girls.------June 30th, 2006---Whew,
The birthday party was great, Sienna got some PEZ
and she posed with me too. They had a Piñata, I
wanted to get into it, but I just watched..I
thought I might end up in one of those party
bags. After the party I played in Cindy's scrap
and rolled around in her box of craft
Butterflies, Cindy says everytime she sees
anything with Butterflies on it she thinks of All
the people who are stricken with EB. We have to
get the word out so more people will know about
EB, and give The Butterflies our support.------I
gotta get ready to leave today..There is a lot
more Wonderful Butterfly Helpers to visit.---
Later,
Dylan and Cindy
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My Buddy Miles!
I am now in Cooperstown, NY to visit Miles
Harris. Miles is three and a half, and has EB
Simplex, like his Dad, Jeff. Jeff works for
Glimmerglass Opera here in Cooperstown, so I had
a backstage tour. I met the stage manager, and
lighting staff, and John Tessier who is playing
Count Almaviva in this summer's production of The
Barber of Seville. (You'll have to see the
photo!)------Everyone knows about the National
Baseball Hall of Fame here in Cooperstown. We
had a great visit there, and to Doubleday Field,
but I had no idea how many awesome other things
there were to do here.------There are many small
surrounding villages, and we visited several. We
went to the Fourth of July parade in Springfield
Center, and met Miles's friend Henry. We saw
fire trucks, (and fire queens), marching bands,
girl scouts, and Red Hat Ladies. The 4H float
had the best candy, but I really liked the
pirates on Glimmerglass Opera's Pirates of
Penzance float.------We went to Community Day in
Middlefield, and visited the old schoolhouse, now
the local historical society. The area has a lot
of working farms, and we visited Miles's favorite
cows. One of Miles's first sentences when he was
18 months old was "Find cows!" There's a photo
of our stop at a horse farm. We pet some
animals up close at the Farmer's Museum, and rode
on their antique carousel.------Saturday I went
with Miles's family to the Farmer's Market, and
on to check out yard sales. I felt very sad when
we saw a Miss Piggy Pez dispenser all bagged up
for sale with some other toy parts. We paused
for Shirley Temples on the back deck of the
Otesaga Hotel, overlooking Lake Otsego. Relaxing
for a few minutes was refreshing, and now I'm off
to Florida.
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St. Petersburg, Florida!
July 15th, 2006---I arrived in sunny Largo,
Florida on Thursday. I got to go to work with my
host, Kristin. While that wasn't very much fun, I
did see just how important my trips have been.
When people see me, they ask about me. Many don't
even seem to know what EB is. Making people aware
of this horrible disease makes me remember I'm
not just here to have fun, but create awareness.
Today was a very fun day. Kristin took me to see
the Sunshine Skyway Bridge. It was very big. I
then went to Fort Desoto Park, where I got put
into the cannon, but luckily it isn't in use
anymore. Tonight I went to walk along the beach
and watched the sunset into the Gulf of Mexico.
It was beautiful. I can't wait to see what I get
to do tomorrow.------July 16th, 2006---Today, I
got to see Tampa. We went to bridal show. It was
very busy and there were many brides there. I
then got to see the St. Petersburg Times Forum,
home of the Tampa Bay Lightning, the 2004 Stanley
Cup Champions. I also got to see a great view of
Tampa. Soon, I'm heading off again. I hear I'm
going to a party. I can't wait! I hear John has
great parties. I also get to see some familiar
faces and get to show off my new tan!
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John Hudson's 4th Birthday party!
Journal Entry Will Be Entered Soon. Please see
the photos in the Dylan Photo Album.
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The Goo Goo Dolls & Counting Crows!
Wow! Chris took me to a concert tonight! We were
invited by Robby Takac to see his band, The Goo
Goo Dolls. He's the bass player. They were
playing at the Jones Beach Theater in NY. They
opened for the Counting Crows.------He left us 2
tickets at the gate! They were amazing seats.
Chris was given a pass that allowed him to take
pictures from right in front of the stage! While
he was doing that, I was wandering around the
stage and I ran into Elsa and Susie! They were
being escorted by Peter Pez! We met some great
people in the audience too. Everyone was so
excited for the music to begin------The sun was
setting and the band came out. Wow! The energy in
the place was amazing! Everyone was up and
dancing! When John Rzeznik, the lead singer, sang
Give A Little Bit, he was looking right at me!!!--
- ---After their set, we went to get some water
and we stumbled upon a great charity
organization. You can visit them on our links
page. They collect canned foods and give them to
different shelters around the country. They are
at every show on this tour. So far they've
collected over 500,000 cans of food. This food
feeds homeless people, displaced families due to
disasters and domestic violence, abandoned
children and more! I really like what they do.
Their name is Rock and Wrap It Up Inc., They also
collect all the unused food used for the band and
crew and bring it to local shelters so people
have meals that night.------After meeting more
people, I made my way back to the seats just in
time to see the Counting Crows perform. Their
band is amazing too! Adam Duritz puts on an
amazing performance.------On the way home, Chris
told me he is arranging for me to be at another
show on this tour where I'll actually go back
stage and meet Robby! I can't wait! Robby has a
great PEZ Collection too. He must miss it when
he's on the road, because on one of his amps on
the stage are 2 Giant dispensers! Homer and Bart
Simpson.
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Moondance Jam 2006!
I had a great time visiting Susan in Minnesota.
I joined her in northern Minnesota and spent some
fun times at the lake. Then we headed to a big
four day rock festival called Moondance Jam.
Last year Susie attended and this year I got to
go! It's a fun time, but also a lot of work.
Susan works backstage hospitality and also cooks
breakfast for the bands and their crews.
I "helped" and then enjoyed some great music. We
saw Alice Cooper, The Doobie Brothers, Steve
Miller Band, Heart, The Bangles, Poison, Ted
Nugent, and many other great rock and roll bands.
What a fun time! I got my own backstage badge and
enjoyed watching the bands from a special loft
above stage called The Treehouse. The
temperatures were over 100 degrees and there was
little time for sleep, but I survived! Rock On,
Dylan!
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Rachel & Matthew Barber
I am now in Delaware, Ohio visiting with the
Barber family. They have 2 children with
Recessive Dystrophic EB (RDEB). Rachel who is 7
and Matthew who is 5. Both are wonderful children
who have to go through so much when dealing with
their EB. They both have several medicines they
take on a daily basis and they get their bandages
changed from head to toe every other day. I even
got to sit with them through a bandage change
and " Boy, are they brave little troopers." ------
On Friday, I got to go to Magic Mountain with
Rachel and Matthew. We all played putt-putt golf
and I got my picture taken with them while we
were playing. It was so nice to see the kids out
having such a good time.------On Saturday, we
went to a big fundraiser party. A very nice
family hosts a party every year where their
guests bring items for Rachel & Matthew. The
items range from bandage items to food items the
kids love to eat. Everyone there was so nice and
friendly and so generous with the things they
brought.------I had a wonderful time during my
visit with The Barber's. They helped me to
understand even more about EB and what a day in
the life of an EB child entails.
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MNPEZCon 11!!!
I got to see Susie again! We both showed up
together at a PEZ Convention in Minnesota. She
was here last year and she told me Dana & Juli
Kraft do an amazing job putting on this event. I
got to meet some familiar faces and some new ones
too! Some of the people I met will be having me
come to their house soon! You gotta check out my
photo album and see all the PEZ dispensers
everyone brought with them! It was the most I
ever saw in one place! Even more than at the
factory where I was made!
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Our First Donation To The EBMRF
August 18, 2006---Well it's Friday night and I am
out at the ball park watching the a Salt Lake
Bees game. I was able to meet so many wonderful
people. Lynn Anderson, the president of EBMRF met
us at the stadium and showed us up to a picknick
on the patio above the field. What a great view!
There were quite a few beautiful Butterflies
around. I am really excited to meet Zach Troop.
There was a special presentation where TPD
presented Lynn and the EBMRF with a wonderful
donation. Salt Lake City, Utah is such a
beautiful city. We are almost completely
surrounded by mountains. I hope the Bees win the
game. There are supposed to be fireworks tonight
after the game.------It is now a little later,
and I am still at the Bees game still. One of our
beautiful Butterflies named Jamie just sang the
National Anthem. She has the most beautiful
voice. I heard that she just got married.
Congradulations!!!------For the past couple of
days I've been at the student apartment of Rick &
Chrysi Davis. They are introducing me to Zach
soon. I have to get ready to go now. I'm excited
to meet him. I heard that I get to go to Zach's
Birthday Party too. See you later. Dylan.
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A week in Utah with the Troops
August 28, 2006. Oh my goodness, what a week! I
don't even know where to start. I had such great
time at the Bees game. The fireworks were so
great. Zack let me sit in his carseat with him
and we both fell asleep on the way home. Over the
next few days Zack and I spent a lot of time
playing with his cousins. He has lots of cousins
that know how to play gently with him. We rode
bikes, platey soccer and even hide and go seek.
Zack showed me how to play his playstation and
Nintendo game boy games. Boy is he good! Friday
night we had to get all dressed up and go to a
wedding reception for one of KaDee's cousins. We
got to go all the way to the top of the JSM
Building.It had big windows and I could see the
whole city. Saturday we went to Snowbird Ski
Resort. Snowbird hosted some of the events for
the 2002 Winter Olympics. We started off the day
fishing. Zack caught a HUGE fish. After we kissed
the fish we put it back in the water and it swam
off. Next we took a ski tram all the way to the
top of Hidden Peak. The elevation was 11,000
feet. While we were at the top of the mountain it
started to snow! It was very cold, only 38
degrees. Brad gathere up a huge snow ball for us
to play with. Before we left for home we had a
picnic. Saturday night was Zack's birthday party.
What a crowd, over 50 people came to help us
celebrate. Zack had a big chocolate cake and he
let me help him blow out the candles. Sunday
after church we got to just relax. We even spent
some time in the hot tub. Zack was busy showing
off his new belly button, he showed it off all
week. Zack was great to let me snuggle in his bed
with him. He even shared his new tractor blankie
and pillow. After a very tearful good bye, KaDee
packed me up for my next adventure. I hope to
make it back to Utah Soon. -Dylan
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Wow! What a PEZ collection!
Sept 3, 2006---HI-Susie and I are both in
Marshall, Mn.First time for me but Susie was here
earlier with the Brumells. Friday we hung out in
Maryann's Pez room where we met her Pez girl and
a bunch of other Pez-yesterday (sat) we went
touring Marshall which is the home of Schwans Ice
Cream , so we visited the Red Baron Museum and a
real functioning old fashioned soda fountain. Got
to talk to a few about our purposes when wew were
doing photo shoots for the web site. Even in the
rain it was fun and we signed the Visitors
register at the museum-Bet that will cause some
to ask questions! ha. Our next stop is Washington
and we will be together again .
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Dylan meets the Hammonds!
I arrived in the small town of Ephrata,
Washington and met Sylvia (a Pez collector) and
her daughter Sarah. We went to Seattle to help
Sarah get set up for college. Everyone worked
hard. Sarah was tired on the drive home so I gave
her a foot massage. There is a picture of this on
the TPD website. It is pretty funny. When we got
back in Ephrata, Sylvia and I had a good talk
about EB. She told me that while she has never
met someone with EB in person that she was very
touched by a TV documentary on the disease. She
was very impressed with the courage that it takes
to face each day with this disease. We decided to
take some picture of me doing some mildly
courageous things. I met the family’s big dog,
but he turned out to be more afraid of me than I
was of him! I got up close and personal with some
big farm equipment and I even explored a bat
house that is in the back of the barn. Sylvia
told me bats are good for bug control…YIKES,
that’s scary!
I also had some time to relax in the garden and
had my picture taken with some roses that match
my color exactly. I am especially handsome in
that shot! Well, we had lots of fun and now I am
off for my next adventure. I’ll be writing more
soon.
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National EB Awareness Week
Silly me, I forgot to mention - in the last
remaining hours of the last remaining day of the
109th Congress, we're thrilled to report that the
Bill for National EB Awareness Week was
unanimously passed by Congress! We should be
getting a Presidential proclamation soon, and our
first "official" year will be celebrated in 2007!
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