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.
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
on 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.
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
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
is 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
2006. And the babies lost due to PL Imani Selby June 6th,
2005 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!
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money from the sales of their CD's and donations
to purchase musical instruments for hospitalized
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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
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 firstname.lastname@example.org.
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
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
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 :
email@example.com ................................................ 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.
Beverly Eye Greenville, SC USA