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
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 community."
Hillary Rodham Clinton U.S. Senator from New York
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 community."
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.
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.
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.
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
you.
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
you.
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
XXXXXX
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
you.
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
you.
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
XXXXXX
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.
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.
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!
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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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
at www.childrensmusicfund.org
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
at www.childrensmusicfund.org
In support of littleleakers.com
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 DHigh85@aol.com
Thank You!
Denise Welty
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 DHigh85@aol.com
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 carlos.garcia.cruz@gmail.com.
Thank-you!
Carlos
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 carlos.garcia.cruz@gmail.com.
Thank-you!
Carlos
In support of littleleakers.com. To visit this great shop just click on one of the
links below.
links below.
Little Leakers would like to share a story
about a real Angel, her name is Reese. Baby
Reese has touched so many lives in such a
small amount of time. Her story is a story
that the whole world can learn something
from. I have learned alot from this very
special person. Please visit her site at
about a real Angel, her name is Reese. Baby
Reese has touched so many lives in such a
small amount of time. Her story is a story
that the whole world can learn something
from. I have learned alot from this very
special person. Please visit her site at
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 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
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
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 :
mrlomike@webtv.net ................................................ 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
- 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 :
mrlomike@webtv.net ................................................ 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