the KT Foundation
Thanks for visiting the KT Foundation website. The KT
Foundation is a nonprofit, charitable organization and
was incorporated in the state of North Carolina and
received its 501( c )( 3 ) status in May 2002. Our officers,
Board of Directors, the best volunteer staff available,
KT patients and KT families are working "together
to solve the KT puzzle!!"
like to share with you how the idea for the KT Foundation
came about. It may shed some light on how we developed
the mission and the purpose of the organization.
we got started
We are Mark and Del Metcalf, parents of five-year-old
Kyle, who has Klippel-Trenaunay Syndrome (KT or KTS).
The idea of the KT Foundation originated as a result
of our search to find help for Kyle and the hardships
associated with this search. (As with every case of
KT, it would be both lengthy and difficult to explain
everything a patient has encountered. What follows is
only a brief summary.)
Coping with a new child who was born with a problem
that pediatricians and other physicians could not explain
was almost unbearable. (Kyle has a twin sister, Kayla,
who does not have KT.) We did see a surgeon at UNC Chapel
Hill that had narrowed the possibilities. One possibility
was KT, but it was difficult to make an accurate diagnosis.
KT, after all, is rare and each case is unique. However,
doctors tried to assure us they could help.
physicians treated Kyle with medicines ranging from
high doses of steroids to Interferon, nothing helped
and Kyle's condition worsened. We were led to believe
by several pediatricians that Kyle had an extremely
large hemangioma. Kyle's condition met some of the characteristics
of a hemangioma, though not all of them-and he had other
characteristics involved. After two lengthy hospital
stays early in Kyle's life, we were anxious to get the
best care for our child and find definitive answers.
We searched for doctors noted for their work with hemangiomas.
nine months of looking for help, with Kyle enduring
various treatments and hospitalizations, we learned
about Dr. Milton Waner of Children's Hospital in Little
Rock. He specializes in vascular malformations and hemangiomas
and is world-renowned for his expertise in hemangiomas.
We flew out for an examination. Dr. Waner immediately
recognized and diagnosed Kyle's condition as Klippel-Trenaunay
Syndrome, as our surgeon at Chapel Hill had suggested
it could be. We then started our life dealing with KTS.
left Little Rock with a sense that a burden had been
lifted. We had a diagnosis and thought, "now we
can get help." We got home and immediately starting
"surfing the web" to learn more about KTS.
We soon discovered the words that we had not thought
No Cure! We also found out that there were very
few physicians and hospitals with expertise in treating
KT. The two facilities that were readily mentioned were
the Mayo Clinic in Rochester, Minnesota and Children's
Hospital in Boston. Both hospitals are nearly a thousand
miles from our home.
to this point, we'd spent thousands of dollars traveling
for help (while taking time off from work), researched
everything we could find for months, and made countless
doctor visits. After all of this-and the worry, anxiety,
fears and lots of tears that go along with it all-the
best medical advise we could get was "learn to
live with it."
was time to visit these two specialty clinics because
the words "learn to live with it" did not
and still does not settle well with us. This was when
we realized a great need: to raise money to fund medical
research for KT. The first purpose of the KT Foundation
doctor here in North Carolina knew of KT and had a couple
of other patients with the condition. Knowing the rarity
of KT, he put us in contact with the other families
so that we could all share our experiences and support
one another. We also communicated with other families
arranged through the KT support group. During our telephone
calls, the recurring theme was much the same: there
were so few medical options for KT patients. Sometimes
the story was worse than our situation and many times
not. (Dr. David Driscoll at the Mayo Clinic had told
us that on a scale of 1 to 10, Kyle's case was a 4 or
5 so we had a sense of how our situation might compare
these shared experiences with other families, another
recurring theme became evident. Travel related costs
were overwhelming and some families chose to take their
children to surgeons within their local area and state.
These families were aware of the risks of seeing surgeons
with less knowledge and experience than the physicians
in Boston and Minnesota. But for many families, seeking
treatment locally was the only option. We heard too
many horror stories about how children had suffered
greatly at the hands of surgeons who had only the best
of intentions, but simply lacked the expertise that
children with KT need. Many times we would suggest the
Vascular Anomalies Center at Children's Hospital in
Boston or the Mayo Clinic. But too many parents responded
that they simply could not afford it. It was obvious
we had our second purpose for the Foundation: to raise
funds that would enable families to travel to seek the
medical treatment they needed.
at a seminar we attended, Dr. Milton Waner said some
words that we will never forget: "The medical
profession, in general, has ignored KT patients and
their needs far too long. It's time to change that."
This is the mission of this Foundation. The words to
the song "On the Turning Away" (a chorus of
which we have printed on our home
page) say it aptly: "It's Not Enough Just to
Stand and Stare. Is it only a Dream that there'll be
No More Turning Away?"
We Hope to Accomplish
Through our fundraising activities and contributions
from both the general public and corporations, the KT
Foundation will use our money in two ways:
of the funds raised will go toward medical research.
We will keep you informed on where the money goes
and what it is to be used for on our "news
and events" page. We will periodically poll
our KT families to see which area of KT is of specific
of the funds raised will be put in the Medical Travel
Assistance Program (Visit the "Assistance
Form" page that's linked on the home page
for more information.) It is our belief that every
child deserves to be seen and treated by only the
best and most experienced physicians. Currently, we
believe that Children's Hospital in Boston and the
Mayo Clinic provide KT patients the best possible
care available and these are the two facilities that
the KT Foundation will support at this time. Travel
assistance funds will be limited to these two facilities.
Exceptions can be made, though certain conditions
must be met. We believe that the more patients these
two clinics can see, the more knowledge each group
of physicians will gain. This ultimately benefits
all KT patients as a group.
long-term goal is to play a vital role in finding a
cure for KTS. Realistically, though, that could be some
time in the distant future. So it is our immediate goal,
then, to provide funds that will lead physicians to
find more effective medical procedures, treatments and
medicines to alleviate many of the painful and disfiguring
symptoms KTS patients must endure.
and I may have started this foundation but it is by
no means ours. It belongs to each KT patient and each
family associated with KT. It is not something that
we can do alone and we ask that you get involved to
help us accomplish the KT Foundation's goals! We would
go to any lengths to help our son Kyle and we know that
you would do the same for your child. We look forward
to working with you in the future to better the lives
of those living with KT.
P.O. Box 205
Lakeview, NC 28350
purpose of this web site is to provide information and
support for those afflicted with Klippel-Trenaunay Syndrome.
This web site is not intended as medical advice but
is the opinion of it's authors. Any medical decisions
should be carefully discussed with a physician. For
information regarding physicians and medical facilities
treating KTS, please visit our links