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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Meet our Children...

On this page, you have the opportunity to meet some of our "little heroes" afflicted with Klippel-Trenaunay Syndrome. From reading these brief biographies, you will find that these children are remarkable individuals as they attempt to maintain normal, active lives while battling this painful disease with its many complications. As you read, keep in mind that many times people "look up" to heroes while in our case, we look down to find our heroes.

Sinéad Ellis

Sinéad was born April 8, 1991 in Ontario, Canada. She has spent most of her life in and out of SickKids Hospital in Toronto. Her KT affects her right side from her hip down to her toes.

Some of the complications Sinéad has due to KT include: Chronic pain, lymphedema, spontaneous bleeds leading to extreme blood loss, chronic open wounds on her right foot for the past 13 years, which have led to hospitalizations for infection, pain, and wound management. Some of the surgeries Sinéad has had include multiple skin grafts, 40 (and counting) wound debridement surgeries and surgery when she was 12 to destroy the growth plates in her right knee to prevent further leg length discrepancy. Because of her numerous hospitalizations she has had to have multiple PICC (Peripherally Inserted Catheter) line placements. Even though she is only 21 now, she has had over 60 hospital admissions throughout her short life. Her KT also affects her stamina when it comes to standing and walking which has led to her needing to use a wheelchair some of the time. Sinéad also suffers from multiple other chronic illnesses and is currently looking into getting a service dog.

When Sinéad is not in a hospital, she tries to live everyday to the fullest, pushing herself to be the best she can be. She tries to be as active as possible and enjoys raising awareness for the KT community, travelling, playing piano, going to concerts, trampolining, hanging out with her friends, modeling, and cooking.

Timothy R. Dickey

Timothy was born March 21, 1990 at Pensacola Naval Hospital in Pensacola, FL. Even though he was carried for the full-term, he weighed in at less than 5 lbs. Being in the military, we have seen many different doctors, all of them good. His first surgery was at 5 months to correct the bilateral inguinal hernias he was born with. He has had six more hernia repairs.

He was also tested for Cystic Fibrosis several times, never getting a negative or a positive result until they did a genetics test and finally ruled it out. No one could put a finger on just what was wrong with Tim until a pediatric surgeon at Portsmouth Naval Medical Center recognized the signs of KT. At that point we thought it was confined to his left leg. After visiting the Vascular Anomalies Clinic at Children’s Hospital of the Kings’ Daughters in Norfolk, VA for confirmation of the diagnosis, we found out it is also affecting his left kidney, left lung, and extends into the neck and head region.

Tim is the oldest of three, with a brother Kasey and a sister Carolyn. He is a very active boy. He is in the gifted program and attends school in VA. He plays clarinet in the band. He is also involved with the Royal Rangers at church. He is limited only by what hurts him and we let him set his own stopping points. He is also a wiz on the computer with Power Point presentations and is getting involved in working on our family web sight with his Dad.

Timothy is a real blessing to all that know him. He is never down and seems to always lift up those around him. Everyone has a special saying that means something to them and Timothy gave me mine! As we spoke one day he looked at me and stated "It won’t be so bad being in a wheelchair. I can still be an orthinologist, and when I go bird watching, I will always have some where to sit."

December 6, 2008 - UPDATE from Tim's father:
Tim has been dealing with his KT for years and is my hero! He is now a member of the Marching Southerners at Jacksonville State University in Alabama! He has fought hard to stay out of his wheel chair. He hikes in the mountains to build up strength in his legs. He has been such an inspiration to both his high school band at Kecoughtan High School in Hampton, VA and now to move onto the college level of marching band is a God send! He is a double major of both Music Education and Computer Science. His goal is to become a High School Band Director. He has grown to be a wonderful young man that any parent would be proud of. I just wanted to let others know that, yes these kids have special needs, but with love and a lot of prayers they can make a difference in everyone’s lives that they come into contact with!


Timothy FaulknerTimothy R. Faulkner

Timothy was born on June 29th, 2005 in Oregon, Ohio. He is affected with KT on his left and right feet, left and right legs, buttocks, scrotum, and abdomen. He also has a mass in his side that goes from his chest to his scrotum surrounding a few of his organs, and lymphedema. He has been hospitalized many times for infections, Cellulitis, and many other things. He has been through two major surgeries. The first one was when he was 12 months old, which included toe amputation and debulking. When he was 19 months old, they removed hydro seals from his testicles. He has many more surgeries to come. "We go to Cincinnati Children's Hospital and see some really great doctors."

Timothy is a very active little boy. He loves Elmo and Winnie the Pooh, but most of all he loves to be pulled around in his wagon. He also enjoys going camping in the summer, riding the golf cart, and swimming. He never lets anything stop him. He can do anything any other baby I know can do and if he can't, he will keep trying until he can. He has a very loving family - they are not only supportive to him but to his parents as well. "We love Timothy very much, and we hope that someday he will fulfill his dreams.", says his mother. "We hope that he never gets told 'you can't', because, if he puts his mind to it, he can defiantly can do it!"





Luke Lefebvre

Luke was born on March 14,1996. He is affected with KT on his buttocks and right leg. He has had a total of 12 surgeries and has been hospitalized numerous times due to frequent infections.

He loves to play with his friends at school because they care a lot about him. Although he is a shy little boy, nothing stops him from doing the things he enjoys the most: camping, riding his bike, skateboarding, dancing and splashing in the pool. He has a passion about becoming a doctor when he grows up and most of his toys include medical instruments. He even has his own scrubs with his name on them. When he comes home from the hospital, he brings all the instruments they use on him; I.V. line bags, empty syringes, gloves and even the little mask used to put him to sleep. Yet, he is afraid of all...He even cries when he sees a regular bandage.

Luke is surrounded by a very loving family that cares a lot about him and will always encourage him to reach for the stars and to enjoy life to the fullest.




Kyle Metcalf

Kyle was born on December 26, 1996 one minute after his twin sister Kaila. He was born and lives in North Carolina. Kyle is affected with KT on his right buttock with involvement extending the entire length of his leg to his toes. Like many others with KT, he has had numerous doctor visits and hospital stays due to pain, infections , surgeries and cellulitis.

Kyle's hospital stays have presented many unpleasant memories but some good ones as well. During his last hospitalization at Children's Hospital in Boston, home town friends & Red Sox manager Grady Little and his wife Debi visited him and gave him an autographed book from the Red Sox players and their wives. Other gifts included an authentic Boston Red Sox baseball jersey (with "Little" stitched on the back) and an autographed baseball from right-fielder Trot Nixon. Once in the hospital at Chapel Hill, NC, Kyle met NASCAR driver Bobby Labonte. Kyle enjoys racing and his favorite drivers are Kyle Petty and of course, Bobby Labonte. Despite the horrible memories of pain associated with his hospitalizations, Kyle proudly talks about his celebrity visitors anytime his hospitalizations are mentioned.

Kyle is a unique little guy in many ways. Despite all he has been through, he has never complained. He has a great attitude. Kyle plays hard and tries to keep up with his sister. He once told his mom that if he "just kept going, maybe the pain in his leg would go away. He is also an average 5 year-old boy. He enjoys playing with and aggravating Kaila. Kyle's favorite things to do include: going to Wal-Mart, getting tools from Lowe's or Sears, playing in his grandparent's pool , watching movies, cartoons and going to the theater to see the latest movie. He enjoys playing with his friends at pre-school and is looking forward to starting Kindergarten this fall.


Kayla Wozniak

Kayla Wozniak is 12 1/2 years old and is affected with KT on most parts of her body, especially her legs. She lives in Michigan with her parents, younger brother and various animals. Her first surgery was at the age of 6 to carve new sinus openings that had abnormally grown shut. The latest surgery was to stop the growth plates in her right leg. Without this painful procedure, she would have had over a six inch difference in the lengths of her legs.

Even though activity is difficult, she still enjoys spending time with her Paint horse, Koontash (pictured left of Kayla). She has been an  active member of Bits 'N' Bridles 4-H club for four years. She loves to ride her custom Joyrider bike and swim almost everyday during the summer. During Michigan's long winters, she loves to read and also write stories. She is currently growing her hair so she can make a donation to Lock's of Love, a charity that makes wigs for children that have gone bald from illness or chemotherapy. Kayla has discomfort most days but rarely complains. Whatever the future holds, she will face it with a smile.



Layla FayeLayla Faye

Meet Layla at www.joinevesjourney.com , a site filled with strength, inspiration, motivation, and great stories of self fulfillment and passion. Please join this journey today to have your spirits lifted and strength renewed.

 

 

HE'S MY SON
(Mark Schultz)

I'm down on my knees again tonight
Hoping this prayer will turn out right
See, there is this boy that needs your help
I've done all I can do myself
His mother is tired
I'm sure you can understand
Each night as he sleeps
She goes and holds his hand
And she tries not to cry
As the tears fill her eyes

Chorus:
Can You hear me?
Am I getting through tonight?
Can you see him?
Can you make him feel alright?
If You can can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

 

Sometimes late at night I watch him sleep
I dream of a boy he'd like to be
I try to be strong and see and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know the You're there

Chorus:
Can You hear me?
Can You see him?
Please don't leave him
He's my son

© Myrrh



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