Race’s story~ I am
writing this story not because our son is any more extraordinary than any other
child God loans us but because his life ended suddenly and through it all there
is very significant message to share.
My son’s name is Race
Matthew Salazar. He lived to be 19 &
¼ years old. I am a single mother who
shortly after delivering Race was diagnosed with cancer and as a result could
not have more children. This was a
devastating blow but I thanked God for blessing me with Race and throughout my battle
with cancer, I prayed over and over that he would let me live long enough to
see Race graduate from High School. I
prayed this prayer from my heart for my life and God, in all his glory answered
my prayer. We had made it, I was
healthy and the future looked promising until shortly after High School
graduation, just barely into his second semester of college Race died from
Sudden Arrhythmia Death Syndrome (SADS).
Princess George was born at home in the early morning hours of January 5, 2006. She was delivered by her father Carlos Balma Jr. with the help of her big sister Pheonix Vidal, while brothers Ray Vidal & Joaquin Balma and sister Shai Vidal watched. George was an active little girl who loved and was loved by everyone. She was known for her bright smile and hugs that could knock you over. She had a great sense of humor that always brought laughter to our days. As the youngest of five children, she would always say " I a big girl I can do it". Her big girl attitude drove her to big girl accomplishments. She was the pioneer behind starting a 2 yr. old Bible Study group at her favorite place Calvary Baptist Church. George loved Jesus and sang of his praise daily. She was anxiously looking forward to Easter when she suddenly collapsed in our kitchen. I held her in my arms as she took her last breath. On Tuesday, April 7, 2009 George left this life the same way she came into it, in the presence of the people who love her. George never had a symptom. I never knew. No one could help. She suffered a Sudden Cardiac Arrest due to an unknown heart condition. Princess George's Big Girl attitude lives on in the hearts of her family who now spend their lives dedicated to saving children like her. http://media.causes.com/ribbon/870640
Lee Vernon Blackwell
passed away suddenly and unexpectedly on Sunday, August 23, 2009, at the age of
22 of a previously undetected heart arrhythmia. At the time of his death,
Lee was a corporal in the Marine Corps stationed in Oceanside, California. He
had been a Marine for four years, had just reenlisted for another four, and was
scheduled to be reassigned to the Norfolk, Virginia area.
6/12/85 to 8/28/06
To tell Kerry Ann's story, I must start at her
death. My sweet daughter, Kerry Ann, passed away on
August 28,
2006. Kerry Ann had just turned 21 years old.Before going to sleep that night, Kerry Ann set her cell phone
alarm to
wake her up for work. The following morning Kerry Ann's phone alarm
rang; she
shut it off and suffered a life-ending heart arrhythmia.
On April 13, 2009 my life and the lives of my family members were
forever changed when my cousin died suddenly of a cardiac arrythmia at
the age of 28. Jamie was the highlight of our lives, filling each day
with laughter and smiles. When you were down, he was always
there to
uplift you in any way that he could.
He
came into the world as a complete surprise and unexpected miracle on January
28, 1977. “He was the greatest gift I’ve ever received in my life, says his
mom, Jaclynn Vines. Born of her heart, Rob came to our family through the
selflessness of a beautiful adoption. Rob was a cherished member of our family
from the moment of his birth. He was sealed to us when he was 6 months old.
My son Andrew's story is one of tragedy, but also one of triumph. It started early one afternoon in July 1991 when the telephone rang. A sherriff's deputy said that Andrew, our fifteen year-old son, had been taken unconscious from a car and paramedics were driving him to a local Houston hospital.
William C. "Willie" Pollock passed away on Monday, January 25, 2010.
Willie's death was
extremely sudden, shocking and he never had any symptoms. He was only
28 years
old (two weeks shy of his 29th birthday). He left behind his high
school sweetheart and wife of only 18 months. A few weeks before
his passing, his mom was diagnosed with Wolf Parkinson’s White, which
put her in
the hospital.
Ryan M. Sherwood died Wednesday, Oct. 7, 2009, at his home.
He was 24. Ryan was born in New Brunswick, New Jersey. He was a Ship
Turbo Mechanic for ABB in North Brunswick and was a lifetime resident of Somerset.
Frank was aware of his Wolff Parkinson White Syndrome since
he was a senior in high school. He collapsed in the end zone after
scoring a touchdown for his high school football team. He recovered and
medical tests revealed WPW Syndrome.
On September 10, 2008, my wife Shawn Marie DeVries passed
away from Arrhythmogenic Right Ventricle Dysplasia (ARVD). She was only 35.
Technically ARVD is not considered a SADS disease but very closely mirrors
those in the symptoms.
I remembered the story well. Though small and inside the newspaper, it was the sort that
seizes a parent's heart. "Boy's death at theater
unexplained," the headline said. The sudden death of a 15-year-old Dallas student while he watched a movie at the AMC Grand theater remained unexplained Tuesday . . . ."Brian Price was found dead in his seat at the Grand
about 10:15 p.m.Saturday, with no obvious signs of trauma or foul play,
according to a Dallas
police report."
Jordan Nichols and his father, producer Jackie Nichols, relax at the
new Playhouse on The Square. The young actor, who survived a near-death
experience brought on by Brugada Syndrome (a SADS condition), says his dad's dedication inspires him to go on: "No matter
what happens ... you always have to love what you're doing.''
As we start to remember the good times we realize there were not
enough, a life taken way to soon.. but Justin's death is going to save
lives...My gorgeous big brother Justin, fell asleep to not wake up on September
6th 2009.
Jordan L. Tucker, age 18 years and 5 days, of Cloquet,
passed away unexpectedly in his sleep early Saturday, November 15, 2008 of a
previously undetected heart arrhythmia (a SADS condition). He was born November
10, 1990 in Duluth.
Jordan attended Churchill Elementary School,
Cloquet Middle
School, and would have graduated next spring from Esko High
School. He was an honor student with a passion
for fishing and hunting especially around Lake Vermilion
where he had many "secret" walleye spots. Jordan loved soccer and was named
all-conferences goalie and played in the all star game this fall. He also was
an excellent youth soccer referee.
Brittany's light burns strong. Brittany Valene (1996-2005) was born on
February 17, 1996 as a young, happy, and vibrant young lady.Over her years, Brittany made many friends and touched many
lives.She was always willing to lend a
helping hand, pick those up who had fallen, and smiled at everyone she made
contact with.
Against all odds, Melanie Stichler, of Conroe,
sits with her children Cullen, left, and Kylie in her bed at The
Institute
for Rehabilitation and Research Memorial Hermann in Houston on
Thanksgiving Day 2008 while
recovering from a cardiac arrest caused by long QT syndrome, which
caused her
to faint when her heart suddenly stopped Oct. 17, 2008 while shopping
with
her daughter.
Stephon's journey with Long QT. In July of 2008, Red was diagnosed with Long QT Syndrome. He was getting
a sports physical when his primary care physician thought they should
have his heart murmur checked out. He had an EKG and the doctor said it looked like he had bigger problems than the innocent murmur. The next week, he had a stress test and echo cardiogram. Red was diagnosed with Long QT Syndrome. Red is an extremely active, sports-oriented young man, and this diagnosis is causing some big changes in his life. His family has started a blog to chronicle his journey. Please visit it: http://www.stephonpink.blogspot.com/
Windland Smith Rice was a consummate nature and wildlife
photographer, avid hiker, marathon runner, and more importantly a loving mother
of two boys, ages six months and two years.
Wendy, as her family called her, was a healthy, extremely active young
lady. A picture perfect example of
health…or so we thought. On May 31, 2005
this beautiful and beloved wife, mother, daughter and sister passed away in her
sleep from Long QT Syndrome Type 2, a disorder of the heart’s electrical system
which is often misdiagnosed and in many cases fatal. (1970-2005)
On the
night of May 20th, 2003, our son Jesse came home after working a
full day at Pro-Business Payroll Services in Bothell, WA. He had dinner, laughed and played cards with
friends, kissed his mom goodnight and went to bed. Jesse’s car was in the shop,
so a friend offered to spend the night and drive Jesse to work the next
morning.
Cynthia
Dailard, a beloved wife and mother of 2 daughters, and a senior public policy associate at
the Guttmacher Institute passed away on
Dec. 24, 2006 after suffering cardiac arrest as a result of previously
undetected Long QT Syndrome. She
was 38 years old.
Stephanie Mejias, an
elementary education and psychology major, passed away on July 27 near
her home at Overlook Hospital in Summit, N.J. Mejias was afflicted with
a condition known as cardiac arrhythmia due to myocarditis.
We became involved with SADS when our 19 year old son, Brian collapsed and died during class at MSU. He felt ill and asked for permission to leave to get some fresh air. He collapsed in a courtyard thatwasn’t heavily trafficked. He was not discovered for thirteen minutes and attempts to revive him were futile. He was pronounced DOA at Sparrow Hospital in Lansing. Our lives shattered.
Danny was calm, sleeping, as
a newborn should, deceptively peaceful. The doctor told us he was
experiencing
something called Torsades de Pointes, a French word, he said, meaning “twisting
of
the point”, a phrase used to describe deadly ventricular
tachycardia – a
sign that our little bundle of joy may have something we had never heard
of- Long QT syndrome.
Living Well with Long QT. I was diagnosed with Long QT 34 years ago.
In 1974, both my father and I were diagnosed with Long QT. I was only 7
years old. The information that was given to my parents was slim, but
it kept me alive. Take beta-blockers daily and don't participate in
competitive sports.
Lene’s (Rebecca's mom) journey began on December 27, 2003. Her family, consisting of herself, her husband Jim, and their daughters Rebecca (4) and Morgan (2) had been celebrating Christmas with their extended family members. The little girls were very excited!
My fiancé, John, was a very happy and vibrant 38 year old man. He was
a man who loved his children, his family, martial arts, and helping others. On
July 1, 2005 we were granted the most precious gift when our son Keegan was
born. John's face would light up whenever the kids were around and he fondly
nicknamed our son Mr. Cutesy Pants.
I would really like to add my brother's story to your website. His
name is Jason Ashe and we live in Trinity, North Carolina. He is 22
years old and before May 2, 2006 was in perfect health condition. He
played football ever since he was little and even played college
football.
I have a great friend, whose father climbed all the high peaks
in Europe, South America and those in our continent. When
he settled down and married his family quickly began to grow-ended
up with 7 kids-my friend David being one. Now, when you have
a family of 9, you find affordable ways to have fun together-so
this family learned to hike. David's dad was also a founding
member of REI, and required that each child carry a backpack
equal in weight to his age.
I had no idea what LONG QT Syndrome was until May 2003. I was
3 years too late to save my son and 10 Months to late save my
daughter! My Mom was taken to the hospital for what we thought
was an anxiety attack; she was having rapid heart rhythm and
fainting spells. She was diagnosed with Long QT, a rare and
hereditary heart disorder that can only be found when you are
alive. This doesn't show up in autopsies. It is commonly misdiagnosed
as epilepsy.
My daughter Mary was a happy, healthy
8 ½ year old. She was in second grade and very involved in school
and church. She loved reading and helping her friends and teachers
in any way possible. Mary played soccer, baseball, sang in the
church choir, and played in the church bell choir. She was also
a very talented artist. She loved to draw and paint, and had
been to art camp for the first time the previous summer.
The Day was beautiful and sunny.
It would normally have been just another summer day, but it
was special because it was the day of my baptism. How little
I imagined it would be the turning point of my life.
My life began on January 30, 1979,
in Anchorage, Alaska. My parents, Richard and Mary Lynn, moved
to Walla Walla, Washington, after I was born and built a beautiful
home in the country. Growing up I played in the creek on our
property, rode horses, played the piano and had many times playing
with my two younger sisters, Talitha and Sarah, on our farm.
On august 19,1989, everything changed.
Making a difference
that would affect many people is something I have thought would
be exciting to do. I never dreamed I could make this happen
as a 16 year old.
It all started at
my sophomore meeting when my high school counselor showed my
mom and me a history of all my grades. It not only had the grades
that would show on my report card, but also the grades I had
received on semester finals. Everything appeared to be normal,
but then we noticed something strange. I had gotten a "D" on
my semester final, a fitness test, in Freshman Physical Education.
Part of the test was a timed mile and a half run, and students
were graded according to their time. The more time I took, the
lower my grade would be.
About a year after her father's sudden death, Toni, her
brother Jimmy and I moved to a small duplex at the edge of Peachtree
City. Our house had been sold and once Jimmy graduated from
high school we were planning to move, probably out of state.
The morning of May 19, 1988, I called Toni to get ready for
school. I knew she had not been feeling well the past few days.
She had complained of a sore throat, and was stressing over
her final exams.
Tom was diagnosed with LQTS when he was 9 years old.
With no family history of sudden death, the news was quite a
shock. Tom’s medical history
has been very eventful. The day after returning home from a
church youth ski trip, he had a full cardiac arrest. Our minister
brought pictures from the trip to the hospital. There was Tom
with his friends in a victory stance on a high peak It was hard
to believe that our son, in the hospital bed on a vent, had
been celebrating life on a mountain top just a few days earlier.
Sammy was a late-life fulfillment of my dream of having
three wonderful children. We were thrilled to find out I was
pregnant. The age range was perfect for the older kids to enjoy
their little brother and they took an active role in his care.
They absolutely delighted in each other.
Let me start this by telling you a little bit about Jo.
Jo has been a very sport-affiliated child. He has played baseball
since the age of 5, softball since the age of 7, and Pee Wee
football since the age of 9. He is very athletic. He has played
in USSSA World Tournaments and ASA World Tournaments all over
the world and holds many first place honors. He got to Jr. High
and decided to play football. I was all for it.
I
will never forget the day my dear friend, Ann, called to tell
me that her daughter Kaitlin had been diagnosed with LQTS. She
had been hospitalized after fainting at a track meet and was
diagnosed with the disorder. Ann tried to explain it to me—but
I ended up spending a lot of time on the Internet reading about
it in order to understand it more completely. When her other
children were tested, it was discovered that her son Ryan also
had LQTS. After crying with Ann and for her beautiful children
and thanking God that they had been diagnosed before something
worse had happened I began to feel very helpless as a friend.
Everyday
we are faced with challenges that we must overcome, but are
we really ready to face death? I was definitely not! I
was a normal lively and energetic 25-year-old girl driving down
the busy streets of Houston Texas when my life almost came to
a quick end. On March 18th, 1998 I was faced with the unexpected.
I went to an interview for a job and had a brief syncopal episode,
awoke and then went into cardiac arrest. Fortunately for me,
the two women who were with me knew CPR and were able to keep
oxygen flowing into my body until the ambulance arrived.
In today’s busy lives we have to be open to the unexpected and
rise to the challenges that come our way.I can assure you that my overflowing calendar
had no room for the news of being diagnosed with LQTS in June
of 2000.As a mother
of two teenager daughters, newly enrolled in an MBA program
and an executive in a thriving manufacturing business, I was
already scheduling back to back.From dawn to dusk I was on the go….
Strong spirit, kind heart and a clear vision of the future are
three phrases I would use to describe my oldest daughter, Jenna. Her strong spirit was not shaken when diagnosed
with LQT syndrome in the fall of 2001 and it was her clear vision
of the future that allowed her to participate in the decision
to have the AICD implant. Jenna
has never let her diagnosis of LQT or her implanted defibrillator
slow her down. The Blue Ribbon Award
A beautiful heart stopped beating. On January 17, 2002 after completing the first semester of sophomore
year, our loving fifteen-year-old son, Adam, an honor student
at Grayslake Community High School in Illinois, died of a heart
condition called LQT Syndrome. Around 4:00 P.M., his mother,
Colleen, went out with our son Andy. When she returned an hour
later, she found Adam lying on his bedroom floor. She immediately
called 911, started CPR, and administered our home defibrillator
paddles. Every effort to save his life failed.
January 6th, 2002 was a red-letter day on the Augenblick calendar. It was the 80th birthday of my husband David—my husband of 55 years and the devoted father of our four children. It was the perfect occasion to gather the family to celebrate this milestone. Preparations had begun six months before, therefore all the children, grandchildren, sundry relatives and many friends were able to gather and toast his health and vigor.
I would never have heard of Long QT syndrome if my son didn't
die on December 22, 2001. He was just 25 years old. He was
still living at home and attending WSU. He was a senior. He
had a 3.0 grade point average. He worked nearby at Mr. Goodcents
sandwich shop.
Race’s story~ I am
writing this story not because our son is any more extraordinary than any other
child God loans us but because his life ended suddenly and through it all there
is very significant message to share.
Princess George was born at home in the early morning hours of January 5, 2006. She was delivered by her father Carlos Balma Jr. with the help of her big sister Pheonix Vidal, while brothers Ray Vidal & Joaquin Balma and sister Shai Vidal watched. George was an active little girl who loved and was loved by everyone. She was known for her bright smile and hugs that could knock you over. She had a great sense of humor that always brought laughter to our days. As the youngest of five children, she would always say " I a big girl I can do it". Her big girl attitude drove her to big girl accomplishments. She was the pioneer behind starting a 2 yr. old Bible Study group at her favorite place Calvary Baptist Church. George loved Jesus and sang of his praise daily. She was anxiously looking forward to Easter when she suddenly collapsed in our kitchen. I held her in my arms as she took her last breath. On Tuesday, April 7, 2009 George left this life the same way she came into it, in the presence of the people who love her. George never had a symptom. I never knew. No one could help. She suffered a Sudden Cardiac Arrest due to an unknown heart condition. Princess George's Big Girl attitude lives on in the hearts of her family who now spend their lives dedicated to saving children like her. 
tory, I must start at her
death. My sweet daughter, Kerry Ann, passed away on
August 28,
2006. Kerry Ann had just turned 21 years old.
He
came into the world as a complete surprise and unexpected miracle on January
28, 1977. “He was the greatest gift I’ve ever received in my life, says his
mom, Jaclynn Vines. Born of her heart, Rob came to our family through the
selflessness of a beautiful adoption. Rob was a cherished member of our family
from the moment of his birth. He was sealed to us when he was 6 months old. 
Oct. 7, 2009, at his home.
He was 24. Ryan was born in New Brunswick, New Jersey. He was a Ship
Turbo Mechanic for ABB in North Brunswick and was a lifetime resident of Somerset.
96-2005) was born on
February 17, 1996 as a young, happy, and vibrant young lady.
Windland Smith Rice was a consummate nature and wildlife
photographer, avid hiker, marathon runner, and more importantly a loving mother
of two boys, ages six months and two years.
Wendy, as her family called her, was a healthy, extremely active young
lady. A picture perfect example of
health…or so we thought. On May 31, 2005
this beautiful and beloved wife, mother, daughter and sister passed away in her
sleep from Long QT Syndrome Type 2, a disorder of the heart’s electrical system
which is often misdiagnosed and in many cases fatal. (1970-2005)
Danny was calm, sleeping, as
a newborn should, deceptively peaceful. The doctor told us he was
experiencing
something called Torsades de Pointes, a French word, he said, meaning “twisting
of
the point”, a phrase used to describe deadly ventricular
tachycardia – a
sign that our little bundle of joy may have something we had never heard
of
Lene’s (Rebecca's mom) journey began on December 27, 2003. Her family, consisting of herself, her husband Jim, and their daughters Rebecca (4) and Morgan (2) had been celebrating Christmas with their extended family members. The little girls were very excited! 
I would really like to add my brother's story to your website. His
name is Jason Ashe and we live in Trinity, North Carolina. He is 22
years old and before May 2, 2006 was in perfect health condition. He
played football ever since he was little and even played college
football. 
The Day was beautiful and sunny.
It would normally have been just another summer day, but it
was special because it was the day of my baptism. How little
I imagined it would be the turning point of my life.
year old.
About a year after her father's sudden death, Toni, her
brother Jimmy and I moved to a small duplex at the edge of Peachtree
City. Our house had been sold and once Jimmy graduated from
high school we were planning to move, probably out of state.
The morning of May 19, 1988, I called Toni to get ready for
school. I knew she had not been feeling well the past few days.
She had complained of a sore throat, and was stressing over
her final exams. 
Sammy was a late-life fulfillment of my dream of having
three wonderful children. We were thrilled to find out I was
pregnant. The age range was perfect for the older kids to enjoy
their little brother and they took an active role in his care.
They absolutely delighted in each other.
In today’s busy lives we have to be open to the unexpected and
rise to the challenges that come our way.
. Jenna
has never let her diagnosis of LQT or her implanted defibrillator
slow her down. The Blue Ribbon Award 
A beautiful heart stopped beating. On January 17, 2002 after completing the first semester of sophomore
year, our loving fifteen-year-old son, Adam, an honor student
at Grayslake Community High School in Illinois, died of a heart
condition called LQT Syndrome. Around 4:00 P.M., his mother,
Colleen, went out with our son Andy. When she returned an hour
later, she found Adam lying on his bedroom floor. She immediately
called 911, started CPR, and administered our home defibrillator
paddles. Every effort to save his life failed.
many friends were able to gather and toast his health and vigor.
3.0 grade point average. He worked nearby at Mr. Goodcents
sandwich shop.
