By becoming a piece of the KT puzzle, you can help children that suffer from KT!
By becoming a piece of the KT puzzle, you can help children that suffer from KT!
By becoming a piece of the KT puzzle, you can help children that suffer from KT!
By becoming a piece of the KT puzzle, you can help children that suffer from KT!
By becoming a piece of the KT puzzle, you can help children that suffer from KT!
By becoming a piece of the KT puzzle, you can help children that suffer from KT!
By becoming a piece of the KT puzzle, you can help children that suffer from KT!
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About 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!!"

We'd 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.

How 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.

As 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.

Following 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.

We 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 of…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.

Up 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."

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 was created.

Our 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 with others.)

Through 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.

Once, 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?"

What 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:

  • 75% 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 concern.

  • 25% 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.

Our 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.

Del 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.

KT Foundation
P.O. Box 205
Lakeview, NC 28350
910-949-3054
email: ktfoundation@earthlink.net

The 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 page.



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