Message Board
Little Leakers
Thank You Little Leakers  

I just wanted to tell Little Leakers how much it has
meant to my family to not only have this wonderful
website but to have the support that we very much
needed. We lost our little girl on July 9th, 2006 due
to lymphagiectasia. Her case was extremely rare and
we are still waiting on results. I hope that her story
inspires others to continue to be strong advocates
for your children and know that this condition
requires much more research and knowledge in the
medical field. I stayed up so many nights reading
through everyone's journey, looking for answers and
feeling hopeful for the next day.

I miss my baby girl so much and often wonder if we
had more knowledge in this area, would it have saved
her life? Thank you to all of you! I will continue to
keep everyone abreast on her results.
                       Proud Mommy,
                       Tara Gray
LFR Participates in Health Symposium Convened  
By Senator Clinton

he President of The Lymphatic Research Foundation,
Wendy Chaite
was selected by Senator Clinton to
take part in a health care forum.  

"As a long-time advocate for improved health care
for all Americans, I applaud the efforts of the
Lymphatic Research Foundation to bring this
neglected field of medicine to the attention of
governmental representatives and members of the
research community.  I believe that there needs to
be a dramatic improvement in addressing the needs
of the lymphatic disease
Hillary Rodham Clinton  U.S. Senator from New York
Little Leakers has a mom that who started a store
ebay.  Part of the sales proceeds goes to St.
Judes Lymphatic Research Center.

If you might be interested you can visit her site on
ebay by selecting "community tab", type
"designersclearance" in the username box and click
on sellers items.
Little Leakers is devastated by the loss of one of our own.  
Alison has suffered so in the past few years.  She has shown us
such courage and strength, we can all learn from her.  Alison
went to heaven on Sunday Dec. 10th 2006.  We have seen the
awesome power of love and family.  We will miss you Alison, till
we meet again.
If you would like to make a donation in Alison's name to Sick
Kids for research-bowel dept. Click here.
Dear Alison,
My Mummy has been talking to me lots about you.   Mummy was
very sad today and I asked her what was wrong - she said that
Alison was very sick.  I said is Alison big or little like me - she
said big.  I said what is making her sick - she said that Alison has
Phanlyktasia (lymphangiectasia) - I said just like me.  Then she
told me that you had also seen Dr Rueben (but a couple of years
before me).  I was lucky because Dr Rueben knew straight away
what was wrong with me - because he  had spent so much time with

I am doing really well - growing big and strong and maintaining
good levels (whatever that means) Mummy says that it is all due
to you because my Phanlyktasia (lymphangiectasia) was picked up
so early and enabled my treatment to begin immediately because
Dr Rueben knew what my problem was having worked with the team
looking after you.

I am so sorry I never got to meet you Alison - but Mummy showed
me the photos of you - she said you are a beautiful princess.  
Please know that there is not a day goes by that we will not think
of you and give thanksto you for my life and my future.   Neither
my family or myself will ever be able to repay the debt - but one
day when we're in heaven together maybe we can share a big fat
huge pizza,- and I will get to give you that big cuddle I promised

My whole family send their love and sadness and wish we could
wrap your Mum, Dad and Caroline up in our arms and take away the
pain they are feeling.                 
            Our thoughts are with you all
                                     Brady Eavis
Little Leakers is devastated to say we have lost a dear friend,
Alexis.  She passed away on Sept. 19th 2006.  Our hearts break
for her family who has fought so hard to find relief for Alexis.  
She will be missed.  

We are so hurt that these beautiful people have to suffer so.  
But find comfort in knowing they are no longer suffering.  

May we continue fighting to stop their suffering. Little Leakers
proud to acknowledge Alexis's mother Chris for fighting so
hard to find medical help and research for this disorder.
Little Leakers is devastated by the loss of an Angel
here on earth.  Baby Reese went to heaven on July 9th
2006.  Although she was on earth for only a short
time, she generated enough love to last a life time.
Little Leakers will sadly miss the beautiful friends we have lost
Nancy Groat June 2005, Reese Gray July 9th 2006, Alexis
Rhodes Buck Sept. 19th 2006
and Alison De Silva Dec. 10th
 And the babies lost due to PL Imani Selby June 6th,
and James Howard Works April 8, 2006.  They all had the
strength and courage to fight.  And we will always continue our
fight for a cure and better treatments for Lymphatic disorders
and diseases.  
You all give us the strength and courage to
continue the fight!  
If you would like to see information or a message of  
yours on this board please fill out a message board
entry form.  Or just click anywhere on this underlined
Is a 501(c)3 Non-profit corporation who uses the
money from the sales of their CD's and donations
to purchase musical instruments for hospitalized  
children.  They offer artists  from all over the world
who have donated their musical masterpieces to
help bring music into the hospitals.  Give a special
gift!  If you know a hospitalized child who needs an
instrument or would like to donate, please contact us
In support of
Hi, I have a 16 yr old daughter that has IL.  She has had a life
history of intermittent acute abdominal pain.  She had another
endoscopy, abdominal CT scan, and blood work up this last June.  
Her MD at OHSU said everything came back looking very good in
relation to her IL.

My daughter continues to have intermittent 10/10 stomach pain.  
Are there any other people with IL who experiences this as well?
And if you do, what do you do to help relieve the pain?  Her MD has her on Prevacid, and seems to think that it is a gastric
reflux problem.  But the pain is always around her umbilicus.  Any thoughts out there?  My email address is                                                                       Thank
You!                                                                           Denise Welty
I need information

I am a medical doctor.  My daughter was diagnosed
with Congenital Pulmonary Lymphangiectasia.  She is 7
months old.  I would like to know more information
about treatments or options to treat this disorder.  I
want to offer all possibilities to my daughter for her
recuperation.  Please help us.
My email address is
Thank-you!                                                                 Carlos
We have been asked about Financial aid many times.  
I was told to ask your Medical Care providers if
they have a social worker.  The social worker is
there to help you.  They will get you information
and help for what ever your needs are.   Don't
be afraid to ask, and they keep things confidential.

Also you might to check with your cities
social services.  
I am 46 years old and have just been diagnosed with
Lymphangiectasia.  I had a scope and a biopsy from my duodenum
showed "marked Lympangiectasia".  I am on a low fat (< 30 gms per
day) high protein (100 gms per day) diet.  However, after one month
my symptoms have not improved at all. The major symptom is
continuous and constant nausea similar to morning sickness.  I
understand that this disease although very rare, is more common in
children than in adults.  My research has just begun and I hope to
find a way to control my symptoms.  My sister-in-law came across
this website and I am thankful.  I imagine at my next Dr's appt I
will be referred to a specialist, but I live in small town, so maybe
that is not likely.  We'll see.  Any info or comments from adults
with  this disorder would be appreciated.

Thank you,  Joy
Hi Joy,

I saw your note that you were recently diagnosed with IL, but
were concerned that your symptoms were not resolving quickly.
I am a 48-year-old woman diagnosed with IL last year.

You definitely should try to see a gastroenterologist if you can,
even if it means going outside of your hometown health system.
Call ahead, however, and tell the gastroenterologist's office that
you are coming in for treatment of IL. I say this because even
though I live in a big city, I still had trouble finding a gastro who
had some familiarity with IL. So you want to give the gastro
enough time to read the recent literature on the disease before
he/she sees you.

I've been on the MCT-oil, low-fat, high-protein diet for a year
now, and feel much, much better than I did before I was
diagnosed. Keep with it, and seek out qualified medical care.
Hang in there.                            Donna
Does  anyone  know  of  a  group  dedicated  to  dealing  with  LM  
-  Lymphatic Malformation  or  (  Lymphangioma  ) ?.........................
I  don't  know  of  anyone  else  with  my  problem  .  Since  it  is so
rare    &  more  than    99%  of  doctors  haven't  treated  it  I would  
like  to  chat  with  others  with  this condition   as  we  have  
become  our  own quasi  experts   ..................................... Is  there  
a  special  protective  swim  suit  of  sorts  so  I  can  get  non  
traumatic  aerobic exercise  in  the  pool  or  ocean  without  fear  
of  incurring  an   infection  in  my  leg  ... I  try  to  avoid  showers  
on  days  when  the  leg  is weeping fluid..........................................
What  about  diet  ... I  use  very  little  fat . ( trying  to  lower
cholesterol )  ...   tofu,  hot dogs  &  veggie  '  Boca  '  Burgers '   as
well  .... ....  I do  however  take  fish  oil  capsules to  fight the bad  
cholesterol  &  raise  the  good ..............  Know  of  any  groups
with  LM  -  preferably  ... lymphngioma  ....  as  I  refer  to  it  as    
lymph gland  gone  wild  .....I  need  some  feedback  from  the  
few  others  out  there  dealing  with  this ... they  call  email  me  :  ................................................ Are  their  any
new  treatments  on  the horizon   ?  ... I  believe  my  cells  are  
mostly  macrocystic  ....  maybe  too  large  a  mass for  complete  
sclerosing  .......                           Thanks  ,  Nicky  Sears  
My 14 year old daughter has been dealing with
Intestinal Lymphangiectasia.  She is seeing a
pediatric gastrologist and a dietician.  She was
diagnosed when she was 8 at MUSC (Medical
University of South Carolina).  She did fairly well
until 2 years ago.  I would like to know of a hospital
center that someone might suggest for me to take
her  for further testing and suggestions about
managing this disease.  It was recently suggested
that she consider a G-tube.  This is in part
because of her non compliance with the MCT oil
and high protein diet. Also, if any of you are young
teens with this disease she sure would benefit
from hearing from you.  It has been very
unpleasant as you might imagine most 14 year old
teens don't enjoy a swollen tummy and frequent
trip to the bathroom.
Thank you
Beverly Eye  Greenville, SC USA