Meet our Children...
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 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.
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
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 Childrens 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.
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.
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 wont 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
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 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!"
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.
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.
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
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
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.
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.
Meet Layla at
, 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.
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
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
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
You hear me?
Can You see him?
Please don't leave him
He's my son