First Name
:
  Alecia
email address :   
happy521@pacbell.net
City,
Country :
  
Simi
Valley, CA
Message :   
I hope
everyone had
a great
Mothers DAY!
More
space :
  
First Name
:
  Nancy
email address :   
ngroat47@hotmail.com
City,
Country :
  
Grabd
Haven, MI,
USA
Message :   
Hi all, Hows
life going.
Just stopped
by to say
hello and
God bless.
Nancy
4-29-05
More
space :
  
First Name
:
  John
email address :   
carmody@bigpond.net.au
City,
Country :
  
Sydney,
Australia
Message :   
Helen, what a
great site. It is
a credit to you
and all that
have
contributed. It
is easy to use
and so bright
and positive.
Good luck and
keep up the
good work.
More
space :
  
First Name
:
  Jason
email address :   
pie.faye@btinternet.com
City,
Country :
  
Yorkshire, UK
Message :   Many
thanks for such an
informative and
supportive site. My
son has only been
diagnosed recently
and i have been
hunting out
information since. I
found a lot here.
Many thanks
More space
:
  
First Name
:
  Alecia
email
address :
  
City,
Country :
  
Message :   
This is to
Latoya, I have
emailed the
address that
you had left
and cant seem
to get to you.
Please send
me your
address again.
Thanks.
More
space :
  
First Name
:
  Nancy
email address :   
ngroat47@hotmail.com
City,
Country :
  
Grabd
Haven, MI,
USA
Message :   Hi
all, Just stopped
in to say Hello.
I am still
fighting a
stubborn viral
infection but
other than that
am ok. Hope
you are doing
well.
More
space :
  
First Name
:
  Becki
Matthews
email
address :
  
City, Country :   
Edmonton, AB,
Canada
Message
:
  
More
space :
  
First Name
:
  Latoya
Walter
email address :   
toya_walter@hotmail.com
City,
Country :
  
Norcross US
Message
:
  
More
space :
  
First Name :   
Teri Taylor
email address :   
Taylor.Ken@worldnet.att.net
City, Country :   
Clovis, CA. USA
Message :   Hi
Alecia, Just
wanted to let you
know that the
IVIG infusions
that we have
added to Mikes
treatments have
brought his
albumin levels up
higher than they
have been in 6
YEARS!! We are
very excited
about this and Ill
call you soon to
discuss further.
Hop
More space :   
First Name
:
  Kerri
email address :   
kerri_l@msn.com
City, Country :   
Newcastle,
Australia
Message :   
GREAT site &
good info!And
info IS hard to
come by. I am
an adult recently
diagnosed with
primary IL. NOW
lots of health
things over the
years are
making sense.
Keep up the
good work.
More space
:
  
First Name
:
  CJ
email
address :
  
City, Country
:
  
HARRISBURG
PA USA
Message :   MY
GRANDSON HAS JUST
BEEN DIAGNOSED
WITH HAVING IL.
YOUR INFORMATION
HAS BEEN A BIG HELP
IN EXPLAINING
THINGS. THANK YOU.
More
space :
  
First Name
:
  elsa
email
address :
  
City,
Country :
  
italy
Message :   
god bless you
for this
marvelous
work
More
space :
  
First Name
:
  alethea
email address :   
laredo@xtra.co.nz
City,
Country :
  
New
Zealand
Message :   Hi
Helen, Web page
looking great. This
time I had success
opening it. Well
done its a great
source of
information.
Cheers Alethea
More
space :
  
First Name
:
  Juergen
email address :   
jring@sasktel.net
City, Country
:
  Regina,
Canada
Message
:
  I love
your site.
More
space :
  
First Name
:
  Teri
email address :   
Taylor.Ken@worldnet.att.net
City,
Country :
  
Clovis, CA
Message :   Hi Alecia, Happy New Year! Ill call you soon to see how your doing. Did
you link the new IL site at:
http://lymphedema.omno.org/thesite/lymphedema_intestinal_lymphangiectasia.htm
More space
:
  Its
another
great way to
conect with
the few IL
patients out
there. Best
wishes. Teri
and Iron
Mike Taylor
First Name
:
  Helen
email address :   
heleneavis1@optusnet.com.au
City,
Country :
  
Sydney,
Australia
Message :   Hope
everyone had a
great Christmas
and looking
forward to a
sensational New
Year. Try the
Roasted Citrus
Turkey Breast - it
is fantastic.
More
space :
  
First Name
:
  Nancy
email address :   
ngroat47@hotmail.com
City,
Country :
  
Grabd
Haven, MI,
USA
Message :   Hi
Mary Alice, Thank
you for signing
the guest book. I
look forward to
hearing from you
again. Merry
Christmas and
Happy, peaceful
New Year. Nancy
More
space :
  
First Name
:
  Mary
Alice
email address :   
foreveryounghealth@earthlink.net
City,
Country :
  
Troy, NY USA
Message :   Nancy
Groat shred your
address with me.
She has been a
friend and
inspiration since
wemet in college
in the 60s.Despite
her ongoing health
problems she has
More space :   
served as an RN
and pastoral
counselor. Your
quote from
Margaret Truman
defines Nancys
life. May it be
long and happy
and free from
fear.
First Name
:
  Nancy
email address :   
ngroat47@hotmail.com
City,
Country :
  
Grand
Haven, MI
USA
Message :   Once
again I wrote too
much. What I was
thinking of is a way
of being able to
communicate like
the TPN support
site. I am not
computer literate or
I would start a list
- any thoughts?
Nancy
More space
:
  
First Name :   
Nancy
email address :   
ngroat47@hotmail.com
City, Country :   
Grand Haven,
MI, USA
Message :   Hi Helen
and Alecia, Was just
thinking about the site
and wondered if you are
familiar with
caringbridge.com. Teri
and Mike from CA have
one. It would be nice if
we could do a similar
thing, more that the
guest book, to keep
updated with each
other. Or
More space :   
Wishing you and
yourfamilies the
best of the holiday
and good health in
2005. Nancy
First Name :   
Becki
email address :   
nswitzer@flintenergy.com
City, Country :   
Edmonton,
Alberta Canada
Message :   My 3
yr old daughter
was diagnosed
recently and it
was nice to find a
site about kids,
not animals. Her
whole lymphatic
system is
abnormal but it
pools in her gut.
If someone would
like to email me
back it would be
appreciated
More space :   
First Name
:
  Alecia
email address :   
happy521@pacbell.net
City,
Country :
  
California,
USA
Message :   Happy
Thanksgiving to
everyone! I am truely
thankful for being
able to meet so many
special people on our
journey with IL.
Youre not alone.
More space
:
  And
thank-you
Helen for
being a part of
my life. Big
Hugs.
First Name
:
  Nancy
email address :   
ngroat47@hotmail.com
City,
Country :
  
Grand
Haven, MI
USA
Message :   Happy
Thanksgiving to all
my new friends at
Little Leakers. I
look forward to
hearing from you.
Please be patient
as my e-mail is
currently taking a
vacation!! Nancy
More
space :
  
First Name
:
  Teri
email address :   
Taylor.Ken@worldnet.att.net
City,
Country :
  
Clovis, CA
Message :   Hi Alecia,
Good talking with you
on the phone today.
Mike and I look
forward to meeting
you over the
Christmas holidays!
Happy Thanksgiving!
Teri and Mike Taylor
More
space :
  
First Name
:
  bronwyn
email address :   
willbron@bigpond.com.au
City, Country
:
  sydney,
australia
Message :   Hi
Helen, I think of
you all the time
and was very
interested to
learn more
about Bradys
illness. Mostly I
love how you
remain positive
whenever I
speak to you.
Go girl!
More
space :
  
First Name
:
  liz
email address :   
etagla@seven.com.au
City,
Country :
  
sydney
Message :   
thinkyou of
you and
admire you.
More
space :
  
First Name
:
  Leigh
email address :   
leigh@omegamedia.com.au
City,
Country :
  
Sydney
Message :   This
is a really great
little site and no
doubt SO helpful
for those
struggling for a
diagnosis or
struggling soon
after. well done!
More
space :
  
First Name :   
Karen
email address :   
karen.phillips@lthtr.nhs.uk
Comment :   Hi I
am a Sister on a
childrens ward at
the Royal Preston
Hospital in
Preston,
Lancashire,
England. I just
wanted you to
know that your
email had been
sent on to me by
our PALs team
here. I am the
lead nurse for
Patient and Public
Involvement in
the chil
First Name :   
ricky
email address :   
par@alphalink.com.au
Comment :   Hi
Helen, thanks so
much for the
opportunity to read
info about Bradys
illness. It was
amazing!!! and
informative. Well
done to you and
Alecia for all your
efforts. Hope to talk
to you soon. Love to
all the family. xxx
and Scully. Love
Ricky. xxx
First Name
:
  Shoma
email address :   
shomad@chw.edu.au
Comment
:
  
First Name
:
  John
Knecht
email address :   
jknecht@attglobal.net
Comment :   
Keep up the
good work of
helping
others with
this disease.
We have
family with
rare genetic
diseases as
well and only
through
support do
things get
easier. Our
love to all.
John, Cina
and the Gang.
First Name
:
  Tracey
email address :   
sprite-jake@newave.net.au
Comment :   
Great site! My
3yr old Jai was
diagnosed with
LI at 6mth.I
look forward to
swapping some
tips
First Name :   
grant
email address :   
grant@growthrealty.com.au
Comment :   Hi
Helen, This is a
wonderful site to
help peolple
understand your
childrens condition.
It makes it so much
easier to
understand what it
is and feel
comfortable to ask
the kids and their
parents any
questions. Thank
you for sharing it
with me. You hav
First Name
:
  jonny
Taitz
email address :   
jtaitz@doh.health.nsw.gov.au
Comment :   
really enjoyed
the website. I
think it can
become a
valuable
resource for all
patients with IL.
First Name
:
  jean
email address :   
bruening@comcast.net
Comment :   Great
information - just been dx
with primary intestinal
lymphangiectasia, although
the first severe symptoms
appeared at the age of 16
(I am now 38). Hoping to
find other adults with this
condition.
First Name
:
  Teri
email address :   
Taylor.Ken@worldnet.att.net
Comment :   
Hi Alecia,
The web site
is looking
good! So glad
to have this
as a way to
connect with
other IL
patients.
Talk with you
soon! Teri
and Mike
Taylor
First Name
:
  Nancy
email address :   
ngroat47@hotmail.com
Comment :   
Sorry, the rest
of my comment
was lost -
surgery. I am
really pleased
to see this site
as I have only
met a few
people with this
rare condition.
Thanks Teri for
alerting me to
it. Nancy
First Name :   
Nancy
email address :   
ngroat47@hotmail.com
Comment :   I
have IL, was
born with a
fairly complex
condition and
am now 54
years old. I
used TPN (total
parenteral
nutrition) with
IV central line
for 10 years to
get over a
particularly hard
time. I have
been off for 2
years because
of a yeast
infection and
heart
First Name
:
  Nancy
email address :   
ngroat47@hotmail.com
Comment
:
  
First Name
:
  Jennifer
email
address :
  
Comment :   This
is a fabulous web
site! What a great
resource. I am so
impressed with all
your hard work
Alecia. Dylan
looks great and I
know he will help
other families.
First Name
:
  Anna
email address :   
banay214@cfl.rr.com
Comment :   Alecia, I
am so proud of you for
starting this site and
for getting the
information that you so
desperately searched
for in the past out to
others. What an
accomplishment!!
First Name
:
  Teri
email address :   
Taylor.Ken@worldnet.att.net
Comment :   
Hi Alecia,
Thanks for
posting Mikes
Story on the
web site.
Hope you are
doing well.
Talk with you
soon! Best
wishes, Teri
and Mike
Taylor
First Name
:
  Kylie
email address :   
whittenk@sesahs.nsw.gov.au
Comment
:
  Looking
good girls.
First Name :   
Teri Taylor
email address :   
Taylor.Ken@worldnet.att.net
Comment :   The web site
looks great! So glad to
have a way to contact
some other patients with
this rare illness. Our 10
year old son, Mike, was
diagnosed at the age of 3
with Intestinal
Lymphangiectasia. He
recieves infusions of
albumin and calcium every
2 weeks at
First Name :   
Teri Taylor
email address :   
Taylor.Ken@worldnet.att.net
Comment :   The web site
looks great! So glad to
have a way to contact
some other patients with
this rare illness. Our 10
year old son, Mike, was
diagnosed at the age of 3
with Intestinal
Lymphangiectasia. He
recieves infusions of
albumin and calcium every
2 weeks at
First Name
:
  Jane
email address :   
freeman_home@hotmail.com
Comment :   
The kids are
wonderful!
First Name
:
  Coni
email address
:
  
csbrown@pt.lu
Comment
:
  Helen
beat me,
oh well.
Still good
luck and
let me
know if you
need help
or input.
First Name
:
  Coni
email address
:
  
csbrown@pt.lu
Comment :   I hope
I am the first one
signing! Hopefully
there will be a lot
of response from
everywhere, I
already sent Elsa
the link so a start
has been made.
Will join soon. Coni
and Co.
First Name
:
  John
email address :   
jdesilva@pathcom.com
Comment :   My
daughter Alison
De Silva suffers
from this rare
disorder and I
am excitited
about this
website. Keep
up the good
work.
First Name
:
  Helen
email address :   
heleneavis1@optusnet.com.au
Comment :   I
want to be
first to sign
the guestbook
- the site
looks
awesome.