First Name :   
Darla
email address :   
Cookie0241@aol.com
City, Country :   
Fairfield, CA
Message :   This is
Darla, I am 20 and have
IL, just letting everyone
know that I have
recently began a new
treatment regimine for
my IL. Instead of
receiving IVIG through
an IV or through a
Broviac or Portacath, I
am now receiving it
subcutaneously. It is
going pret
More space :   
First Name
:
  Scott
email address :   
kellscott@ozemail.com.au
City,
Country :
  
Perth,
Australia
Message :   
Look to your
children to see
Heros. Look to
the Parents to
see strength.
More
space :
  
First Name
:
  claire &
paul
email address :   
thebethells@ntlworld.com
City,
Country :
  
wales uk
Message :   our
son has
recentley been
in hospital
again on oxygen
due to his pl,he
has fluid in his
chest cavity
again it just
keeps building
up, is this
normal & how
often does it
need draining
More space :   
just need
support & info
as his
breathing is
getting worse
First Name :   
Tonya
email address :   
tlynndombek@yahoo.com
City, Country :   
Palm Bay ,Florida
US
Message :   I have
an 11 yr old
daughter who was
diagnosed in 2005
with IL. I had her
at Arnold Palmer
hospital were they
tested her. I was
told that she was a
rare case because
normally people
who have this have
other issues with
the liver, heart or
pancreas. All sh
More space :   In
the last month my
daughter has
started throwing up
, we thought maybe
she had the
stomach virus, but
this has happened
three times, and
know one seems to
know why. Do you
have any
suggestions or
recomend any
doctors that are
reliable with there
answers
First Name
:
  Marge
email address :   
aylamay67@aol.com
City,
Country :
  
Bolingbrook,
IL, US
Message :   Been a
while since I visited.
Looks great on the
site. I just turned 40
this month, had
lymphangiectasia a
long time. Would love
to hear from others.
More space
:
  Dont know
anyone else
round here
with IL, even
Dr. at Rush
has only had
one other
case. Would
love to
compare
notes.
First Name :   
jacobs Mum
email address :   
City, Country :   
Brisbane Australia
Message :   Gday
Brady I just
visited your page
what a cutie you
are;-) please
Thank Mum for
giving me your
page address and
for visiting Our
Jacobs page
sending you heaps
of positive healing
energy and
prayers stay
healthy little mate
love Jacobs Mum
www.caring
More space :   
First Name :   
Diane Palmer
email address :   
wideglidecruiser@earthlink.net
City, Country :   
Message :   To
my Dearest and
Special
sisterinlaw
Alecia, i cannot
express how
much you are
loved, to share to
all those who are
in need of this
outstanding web
site you had
prepared. All your
hard work, time
and research. My
brother should be
so proud.
More space :   
You are an Angel
and you are loved
so very much. I
am so thankful
you are my
sisterinlaw. Just
wanted to let you
know. love, diane
First Name :   
Darla
email address :   
cookie0241@aol.com
City, Country :   
Fairfield, CA
Message :   Hi,
this is Darla
again. I am
signing in to say
hello to
everyone again.
I am hoping
that I can help
and maybe
meet or talk to
anyone who has
IL or any parent
of a child with
it. I have IL and
I am now 20
years old. I am
pretty sick as a
result of IL and
More space :   
First Name :   
Srini
email address :   
sk_srini@yahoo.com
City, Country :   
Chennai,INDIA
Message :   It feels
great to see a
variety of mouth
watering dishes
mentioned in this
site, for people with
fat intolerance
syndrome. Recipes
likes these helps
me to approach food
without fear. I am
having IL which was
diagonised when I
was 17 and Iam
now 30. I also
More space :   
First Name :   
Alecia
email address :   
lymphhelp@Yahoo.com
City, Country
:
  Simi Valley,
CA
Message :   Hi Beth,
Technically, IL is a form of
malabsorbtion. They just
werent knowledgable
enough to find th cause of
the malabsorbtion. Id be
happy to answer any
questions you may have.
Alecia
www.littleleakers.com
More space :   
First Name
:
  beth
email
address :
  
jefflsbethj
City,
Country :
  
mount
carmel,tn,us
Message :   i have just
been told that i have
il,they misdianoised me
for 20 yrs saying it was
malabsorbtion
syndrome,so im eager to
learn everything i can
about this disease.
More
space :
  
First Name :   
Darla
email address :   
cookie0241@aol.com
City, Country
:
  Fairfield, CA
Message :   Hi, my name is
Darla. This is my first visit
to this site. It is truly
incredible. I have Intestinal
Lymphangiectasia. I was
diagnosed at 2 and I am
now 19.If anyone has any
questions please feel free
to e-mail me. Hope to talk
to you all soon.
More space :   
First Name :   
Tara
email address :   
jeffandtara@austin.rr.com
City, Country
:
  Cedar Park
TX
Message :   I am a HUGE
fan of this amazing
website. We lost our
daughter to this condition.I
look forward to the forum
opening up again and
learning more about
individuals affected by
lymphangiectasia. Thank
you for the support!
More space :   
First Name
:
  Sam
email address :   
racer521@pacbell.net
City,
Country :
  
Simi Valley
Message :   The
site looks
fantastic! great
job! I am very
proud of what
you have
accomplished
here.
More
space :
  
First Name
:
  Pat
email address :   
lymphedemapeople@aol.com
City, Country
:
  
LAwrenceville,
GA USA
Message :   Hey
my Friends So
good to see the
message board
back up and
running!!!!!!!
Best to you and
much success Pat
More
space :
  
First Name :   
Barbara
email address :   
bam@jhwassoc.com
City, Country
:
  San
Antonio, USA
Message :   Hello -
I am the proud and
very blessed
grandmother of our
baby Angel Reese.
She came into our
world and changed
our lives and will
forever be with us.
Thank you Little
Leakers for sharing
her story. Gammy B
More space :   
First Name
:
  Julie
email address :   
julienull@hotmail.com
City,
Country :
  
Delray
Beach, USA
Message :   I
was very
blessed to
meet little
Reese. She
touched so
many lives,
especially
mine. Her spirt
and the spirit
of her parents
will be a
strength for
me always.
More
space :
  
First Name :   claire &
paul
email address :   
thebethells@ntlworld.com
City, Country :   
south wales uk
Message :   OUR SON
IS NOW 11WKS OLD,
BUT AT 3WKS OLD HE
WAS DIAGNOSED
WITH PL ATFER
HAVING A LUNG
BIOPSY. A WEEK
LATER THEY DID AN
MRI SCAN AND FOUND
OUT HE HAS CYSTIC
HYGROMA ALL
TANGLED IN HIS NECK
GOING DOWN INTO
HIS LUNGS, THE
FOLLOWING DAY HE
HAD TO HAVE CHEST
More space :   OUR
DOCTORS ARE NOT
SURE HOW TO
PROCEED WITH HIS
CASE, ANY HELP
WOULD BE GOOD
First Name
:
  HEIDI
email address :   
jamesnheidi@msn.com
City,
Country :
  
Round
Rock, TX
Message :   I am the nurse
in NICU of an amazing baby
with lymphangeictatia
generalized. I am serching
for any information to help
this amazing baby and her
family.
More
space :
  
First Name :   Tara
email address :   
jeffandtara@austin.rr.com
City, Country :   
Austin Texas
Message :   Hi. My
baby girl was born 4
months ago and
has severe PL and
IL. She may not
ever be able to
come home unless
we figure out how
to stop the fluid
from accumulating.
I have posted
Reeses story on
this wonderful
website in hopes to
get any ideas or
answers.
More space :   
First Name
:
  Rebecca
email address :   
witchiebecky@comcast.net
City,
Country :
  
Fort Lewis,
WA USA
Message
:
  
More
space :
  
First Name :   
Denise Welty
email address
:
  DHigh85@aol
City, Country
:
  Eugene USA
Message :   
Wow, what a
BLESSING! I
have a 15 yr old
daughter with
PIL. She is
having chronic
stomach pain
with this. She
will have another
endoscopy next
week. We/She
has most
certainly had
bumpy road with
this disease.
More space :   
Please email
me anyone
that has a
child with this
condition. i
have never met
anyone with a
child with PIL.
Thanks!
First Name :   
Sarah
email address :   
sjbennetts@charter.net
City, Country :   
Hastings, United
States
Message :   Thank
you so much for all
the information. My
son was diagnosed
with IL when he was
9 months old. He is
three now and doing
well. We monitor his
diet, and the
receipes on this site
are amazing. It is
just nice to know
there are others out
there going thro
More space :   
First Name
:
  Alena
email address :   
alena80@mail.com
City,
Country :
  
USA
Message :   you
have very nice
guestbook and
website
More space :   
you have very
nice guestbook
and website
First Name
:
  Bad Dept
email address :   
yosko70@aol.com
City,
Country :
  
Spain
Message :   I
found your page
by chance but
its very
interesting
More space
:
  I found
your page by
chance but its
very
interesting
First Name :   
Ramona Stokes
email address :   
monastokes39051@yahoo.com
City, Country :   
Philadelphia, USA
Message :   My
sister, Tammy on
Jan. 10th, 2006
gave birth to a
girl. Before she
was born they
told Tammy that
her baby had
HYDROPS. Fluid is
present in lungs
and under the
skin. They keep
drawing the fluid
off but it always
comes back.
Recently they told
Tammy that
More space :   
First Name :   
Raylene
email address :   
reedgln@aol.com
City, Country :   
Colton, usa
Message :   My son Kolby
was diagnosed with
lymphangiectasia about a
year ago after a nine day
hospital stay. I just
learned about this web
site and am so glad there
is a resource for parents. I
feel less overwhelmed
knowing that I have
someplace to get recipes
and i
More space :   
First Name :   
LATOYA
email address :   
TOYA_WALTER@HIGHSTREAM.NET
City, Country :   
NORCROSS, US
Message :   HI THIS
IS MY FIRST TIME
HERE AND I AM SOO
RELIEVED TO SEE
THERE ARE PEOPLE
OUT THERE THAT IS
CAN SHARE MY
EXPERIENCES WITH.
MY SON TJ WAS
DIAGNOSED AT
BIRTH WITH IL AND
IS DOING FINE. AT
BIRTH HE HAD A
SWOLLEN RIGHT LEG
AND FOOT. I WAS
WONDERING IF
ANYON
More space :   
First Name :   
Teri
email address :   
Taylor.Ken@worldnet.att.net
City, Country
:
  Clovis, CA
USA
Message :   Hi Alecia, Inviting others with IL to
contact us at Mikes site:
http://www2.caringbridge.org/ca/ironkidmike
Looking forward to hearing from others as we learn
about this little known disease by sharing our
stories. Best wishes, Teri Taylor
More space :   
First Name
:
  Sam
email address :   
sam@brownfamily.id.au
City, Country
:
  Perth,
Western
Australia
Message :   
Wishing
everyone a
fantastic 2006!
Conor is doing
ok - 3 weekly
IVIG and
albumin is doing
what it can for
him. Now we
just have to get
him walking!
More space
:
  Hes getting
cheekier every
day! God
Bless, Love
Sam, Justin,
Aiden and
Conor.
First Name
:
  Lyssa
email
address :
  
lyssad
City,
Country :
  
Kearns, Ut,
USA
Message :   My 2 year old
son was just diagnosed
with Intestinal
Lymphangiectasia. Thank
you for being a good
support to some very
confused parents.
More
space :
  
First Name
:
  Angelica
email address :   
gjolley2003@comcast.net
City,
Country :
  
West Linn,
OR
Message :   
Thank you for
this website.
We love the
recipes.
More
space :
  
First Name
:
  vince
email address :   
aarcurio@floodcity.net
City,
Country :
  
johnstown
pa
Message :   Our
son is 4yrs old
with IL. He has
been struggling
recently. Just
looking for some
HELP! Thanks
More
space :
  
First Name
:
  
email
address :
  
aarcurio
City,
Country :
  
Message
:
  
More
space :
  
First Name :   
Tina
email address :   
btjarussi@verizon.net
City, Country :   
Upland,CA
Message :   What a
relief to find
information that
doesnt require a MD
to understand. Our 8
yr old daughter has
celiac & now
possibly this. We
are waiting for stool
& blood work. EGD
biopsy shows
extensive dilation of
lymphocytes- not
exact wording, but
close. Im rel
More space :   
First Name :   
JENNIFER
PHELAN
email address :   
phelan33@hotmail.com
City, Country
:
  LA CROSSE,
USA
Message :   I HAVE
EPILEPSY. IM A
SURVIVOR OF A
RESECTED
ASTROCYTOMA AT THE
AGE OF 9. I AM 35
NOW. I HAD MY
GALLBLADDER
REMOVED A YEAR AGO
AND I HAVE LOST
More space :   ALMOST 100
POUNDS. I CAN NOT DIGEST
SOLID FOODS EVERYTHING
GOES STRAIGHT THROUGH ME.
THE DOCTORS HAVE RUN ALL
THE GASTROENTEROLOGY
TESTS POSSIBLE. WHAT
SHOULD I DO?
First Name :   
Teri Taylor
email address :   
Taylor.Ken@worldnet.att.net
City, Country
:
  Clovis, CA
USA
Message :   Hi
Alecia, Great
news about the
LRF progress with
Lymphatic
research. It was
wonderful to meet
you in person and
to get the boys
together. That is
the first time, in
his life, that Mike
has met another
person with IL!!
Hope that youre
doing well
More space :   
First Name
:
  Vijay
email address :   
vijay.ambwani@upm-kymmene.com
City, Country
:
  Miramichi,
Canada
Message :   I am refered
to your web site by Cord
(Canadian orgaziation of
Rare disorder) and will
expore your web site to
see If I can find some
leads to Pulmonary
Lymphangiectasia for our
daughter 4 months old
More space
:
  
First Name
:
  Crystal
Pereira
email address :   
cpereira68@shaw.ca
City, Country
:
  
Edmonton,AB,
Canada
Message
:
  Great
site glad I
was given
your URL.
More
space :
  
First Name :   
Fiona
email address :   
City, Country :   
Devon Alberta
Canada
Message :   Thank
you from a Home
Care Nurse who
initially had a hard
time finding any
information about her
client with
lymphangectasia.
This is a great site
and I have already
passed it along to
another collegue with
a client with the
same condition. The
first site
More space :   
First Name
:
  Brad
email address :   
Bradley1@hotmail.com.au
City, Country :   
Melbourne,
Australia
Message
:
  Well
Done
Helen and
Alecia -
this is a
great site -
keep up
the good
work girls
More
space :
  
First Name
:
  Carly
email address :   
carlylouiseford@hotmail.com
City,
Country :
  
Plymouth,
UK
Message :   Hi
Alecia, we are so
grateful for all the
help and support you
have given us.Its so
nice to know we are
not alone and that
we are all helping
one another.Thanks
again x
More
space :
  
First Name :   
Karen
email address :   
karen.ward@dadhc.nsw.gov.au
City, Country
:
  Sydney,
Australia
Message :   My 6
year old son has
just been
diagnosed after 2
years. They
thought his protein
loss was due to
the liver transplant
he had at 18
months.It is all a
bit scary at the
moment but the
web site has
helped a lot. It
makes me feel
less alone.
More space :   
First Name :   
Anna
email address :   
banay214@cfl.rr.com
City, Country :   
Rockledge,
Florida, USA
Message :   Alecia,
Wow!! You have
reached so many
people and given
them the information
that you so
desperatley sought. I
am so proud of you,
as I hope you are of
yourself and what you
have done here. Give
Dylan, Amanda &
Shane our love. Sam
too, I guess... :0)
More space :   
First Name :   
Jason
email address :   
fitfa@btinternet.com
City, Country :   
Yorkshire, UK
Message :   We
think your site is
excellent, our 14
month old son has
IL and we were all
alone until we
found little
leakers, now we
feel we have a
great family of
support. Many
Thanks.
Christopher also
has his own
website now,
where you can
read all about his
illnes
More space :   
First Name
:
  dee
email address :   
cheekydee206@hotmail.com
City,
Country :
  
norwich uk
Message :   
thanks to every
one who set up
this web site I
have only been
diagnosed for 3
months and its
took me that
amount of time
to find you
More
space :
  
First Name :   
Teri Taylor
email address :   
Taylor.Ken@worldnet.att.net
City, Country
:
  Clovis, CA
Message :   Hi Alecia, To find the web
site go to:
http://www.abclocal.go.com/kfsn then
click on the Childrens Hospital logo and
then click on more information on Mike
Taylor. Hope this helps!! Best wishes,
Teri and Mike Taylor
More space
:
  
First Name :   
Teri Taylor
email address :   
Taylor.Ken@worldnet.att.net
City, Country :   
Clovis, CA
Message :   Hi Alecia, Mike was honored
to be on the Childrens Miracle Program
on ABC 30 today. They have linked the
little leakers site to the ABC site. You
can find us by going to:
http://www.abclocal.go.com/kfsn then
click on the Childrens Hospita
More space :   
First Name :   
Nicola
email address :   
nicolamr@optusnet.com.au
City, Country :   
Melbourne,
Australia
Message :   My
daughter Annabel
was 3 when they
finally diagnosed
IL! She is now
almost 14. I have
been looking for
a website for so
long! I have
learnt so much
reading this
tonight!!
More space :   
Noone never
explained
Annabels reaction
to MCT oil...so
we gave up on it.
Now, i will try it
in very small
doses and see if
she can get use
to it. I think the
medical advice
out there is really
lacking! Thank
goodness there is
a site of many
hands doing t
First Name
:
  Sam
email address :   
kaisersammi0@hotmail.com
City,
Country :
  
Perth,
Australia
Message :   Hi,
Im a med
student and I
met my first
little leaker and
his mum the
other day, who
told me about
this web site -
its a fantastic
resource - keep
up the great
work!
More
space :