I just found out that desieses may come to your heart by your lounges. I always keep jimmy and crissy in my prayors.
Please sign our guestbook
Please add a comment to my guestbook
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(Posted on 2009-08-12 21:11:00 by )
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Last week I was learning about the heart and what can happen to it if it is not healthy. If you go to the webpage it will tell you how to not get desieses. I thought of it and thought it could stop the desiese from spreading around.
Here is the address.
http://www.mplsheartfoundation.org/
or
http://www.mplsheartfoundation.org/kids/
(Posted on 2009-02-24 01:39:00 by ) -
I am so touched by the loss of your children. I am an RN and I was studying an EKG course on line and it linked me to the QT syndrome site and then to your site. Please know that your story, the death of your children, and the fact that I was able to read this information will make me a much more informed nurse. I will study this in more depth and be very proactive if I encounter any suspicion of this condition. I will go above and beyond to learn to identify long QT syndrome when running EKG's. It is true that it requires alot of studying to become profient and interpreting ekg's. I hope you can find some peace in knowing that your information has likely reached many people that in turn may help save the lives of others. God bless you and give you strength to get through this life until you see your children again in Heaven.
With deepest sympathy, Martie.
(Posted on 2009-01-25 16:10:00 by ) -
Merry Christmas! I will pray for you guys. It must be sad to loose Jimmy and Crissy. If you need any help contact me. I will keep you in my prayors.
(Posted on 2008-12-20 02:10:00 by ) -
I know how you feel about your family and losing them. I hope you are feeling better about them. I know this is short but I just want to say something to help you feel better.
(Posted on 2008-11-28 14:47:00 by ) -
Dear Jackie,
I go to school with Alexis your granddaughter. Yesterday I was looking at the newpapers and when I saw it,I was concerened about your family. I am going to pray for you and your family. If I can do anything to help you guys, please let me know.
Thank you, Rebecca Parks
P.S I am using my mom's email
(Posted on 2008-11-15 15:19:00 by ) -
I have a google alert for LQT on my gmail. This is how I found about their loss. It is so sad.
Here is the link.
Vickie Wentworth
www.stuff.co.nz/sundaystartimes/4731958a6005.html
(Posted on 2008-10-20 23:37:00 by ) -
I got shook up, I forgot to add my name
(Posted on 2008-10-20 13:23:00 by ) -
Vickie, Oh my Gosh, when did this happen, we need to work on going national, we have to get the word out, email with the details if you have them.
(Posted on 2008-10-20 13:19:00 by ) -
I was reading where Bruce and Nancy Coppell have lost yet another child to LQT. This was their daughter Courtney. Please pray for this family. We are losing too many of our children to this disease. I am so sad.
Vickie Wentworth
(Posted on 2008-10-19 17:58:00 by ) -
Bruce and Nany, I would love to see you add your beautiful children to the Long-QT Syndrome Takes Lives: In Memoriam @ http://www.qtsyndrome.ch/memoriam.html
I lost one child .. I can't imagine losing anyone else. God be with you all.
Vickie Wentworth
(Posted on 2008-10-02 04:06:00 by ) -
We feel for all of you who have had family, children, siblings parents, & relatives who have died without any warning. We lost our first beautiful child ,Rebecca at 13, no warning ,although she did complain of headaches slept alot and had constant lapses of poor health. Our doctors had no reason, or cure to give her,using the common excuse that it must be a viral complaint and throw more pain-killers and anti biotics at it.Rebecca died while attending her college and playing sport, eyewitnesses said she just dropped to the ground, although CPR was administered imediately she never revived, medical help was called and she was rushed to hospital, to no avail. We were distraught,had all our family tested, in 1998, suspicions of an arrythmic heart problem,with no patholgy signs of her cause of death,were concluded.
Well in June of this year we lost our youngest 16 year old only son Joshua , he died in an identical manner, we were devastated, he had been under observation since the death of his sister, he could not tolerate beta blockers, which were as dangerous for him as the suspected LQT condition heappeared to have.His 3 remaining sisters have all been subsequently retested for an inherited condition it appears they carry it. Nancy also showed definite problems when tested ,we read and wonder why it could happen, the scars the broken feelingsthe hopelessness,the deep reoccuring pains of the losses ,and the tears. To all you who have had to bear this same grief, we offer you our sympathy and pray for the strength to get us through these tragic losses of our loved and cherished ones. Kia kaha and aohanui to you all ,Bruce & Nany Coppell.
(Posted on 2008-10-02 01:56:00 by ) -
That song is so true !!!
(Posted on 2008-09-29 22:56:00 by ) -
We lost our beautiful daughter Jolie Samantha Wentworth May 15, 1998 and the age of 20. She was diagnosed with LQT at the age of 11. Her Dr. put her on Beta Blockers which made her heart rate drop to around 35. He never could understand how she could be so active with such a low heart rate. She was a very happy and special person. She never got to marry or have a family (which would have scared me to death). But she was loved by so many. She left the house one night to attend a religious convention and never came home. I remember putting her hair long blonde hair up in a comb and kissing her. There is not a day that goes by that I don't think of her. When I hear the song " Who You'd Be Today" by Kenny Chesney I always get a tear.
Sunny days seem to hurt the most
Wear the pain like a heavy coat
I feel you everywhere I go
I see your smile, I see your face
I hear you laughing in the rain
Still can't believe you're gone
Chorus:
It ain't fair you died too young
Like a story that had just begun
The death tore the pages all away
God knows how I miss you
All the hell that I've been through
Just knowing no one could take your place
Sometimes I wonder who you'd be today
Would you see the world?
Would you chase your dreams?
Settle down with a family?
I wonder, what would you name your babies?
Some days the sky's so blue
I feel like I can talk to you
And I know it might sound crazy
Chorus
Today, Today, Today
Today, Today, Today
Sunny days seem to hurt the most
I wear the pain like a heavy coat
The only thing that gives me hope
Is I know I'll see you again someday
Someday, Someday
I am sure that our children are watching over us and smiling.
Vickie Wentworth ... Jolie's Mom
(Posted on 2008-09-29 13:24:00 by ) -
I would like to thank everyone for all your kind and caring words of Jimmy and Crissy. Janurary everything you said about Crissy was so true, she was a ray of sunshine in so many lives, my life has forever changed without both of my children.
Thanks to everyone
Jimmy & Crissy Mom Forever
Jackie
(Posted on 2008-08-10 14:43:00 by ) -
Hello. Chrissy was a good friend to me for a short time. We met at work back in 2001. She was super sweet to me and everyone around her. We all said, "I love that girl!" to each other. :) I rememeber the two of us would talk about the future and discuss different options (you know... life in general). We laughed a lot. I loved her as did all of us at work. I moved away and lost touch. I hope she knew how much I enjoyed our time. I heard from a mutual friend that she passed away in 2002 and to be honest, I thought it was a rumor. I tried to find some solid information, but couldn't at that time. Throughout these years, I've always wondered. I told my mom about Chrissy a few months ago and how I really wanted to find out what happened with her. She found a site with the information on it. I am very very sorry that you've lost her and Jimmy. I remember she talked about Jimmy sometimes and how she missed him.
You're awesome for spreading the word on Long QT. I have spread the word as well... just by mouth to friends and family. You never know who they'll pass the information along to.
I will continue to pray the The Lord keeps His angels around you and the girls and everyone associated with this syndrome.
love, january.
(Posted on 2008-07-31 20:02:00 by ) -
What words can one say to try to grasp the loss. We lost our beloved princess Lindsay on July 3, 2007. By all accounts she lead a pretty normal life as a young adult. She came home from work, talked with her mother for a few minutes and went to her room. No more than 10 minutes later, my wife found our princess collapsed at the end of her bed...
The post mortem results came back negative and so far no definitive answers have been found as to why Lindsay passed away. The pathologist suspects Long QT or Brugada Syndrome...
Since Lindsay's passing the myself, her mother and brother have all had EKG's that came back normal...
Why she is not with us today...I do not know...But I do know that any parent that has lost a child in this fashion, sudden and unexpected looses a piece of themselves... Grief is a lonely road, experienced by many but shared by few....
My heart goes out to you...
Peace and Comfort.
James, Kathi & Ryan White
(Posted on 2008-05-28 12:44:00 by ) -
What a beautiful tribute to your children! Myself and two of my children have a SADS condition (Brugada) and our protected with our guardian angels on our shoulders - our ICDs. We are so thankful to be protected and work through our Campaign 'Keep it Beating' to raise awareness, funds for research and AED promotion to put a stop to the tradgedies like your family has had. It is amazing how often we hear a simple ekg could have made all the difference, or if only an AED was close by. Like you we are working hard to get the word out! God Bless you and your family!
(Posted on 2008-04-30 22:07:00 by ) -
THIS DISEASE HAS CHANGED OUR FAMILY FOREVER-WE WILL NEVER BE THE SAME, A PART OF US IS GONE NEVER TO RETURN. SINCE MY COUSINS DEATHS MY AUNT HAS BEEN ON A MISSION TO BRING AWARENESS TO THIS LIFE STEALING DISEASE. SHE IS THE BRAVEST WOMAN I HAVE EVER KNOWN . THROUGH HER & HER VOICE JIMMY & CHRISSY, & THOSE WHOSE LIFE LIFE WAS TAKEN TO EARLY WILL NOT DIE BUT LIVE ON TO EDUCATE US ALL.
(Posted on 2008-04-07 15:39:00 by ) -
Jackie,
What a beautiful tribute to your beloved children and a very informative website. Thank you for adding my son Louis' story to the Personal Stories page. We share the same painful tragedy and we must do all that we can to keep their memories alive by spreading the important messages included on your web pages. May you find peace in knowing that you are doing wonderful work to help save other young lives.
(Posted on 2008-04-05 12:29:00 by ) -
I love your web page. I hope this will teach people to have the children and /or families to ask questions to their Doctor about having EKG's and to be able to talk to their doctors about anything. You are a great mom and grandma and aunt too.
(Posted on 2008-04-02 20:20:00 by ) -
i am alexis , i love my grandma and am very happy that my dad and aunt have pictures of themself so every time i miss them i can see them! I am 10 and love life!
(Posted on 2008-04-02 18:22:00 by ) -
Monica Martin.Dublin,Ireland
What a beautiful website a lovely tribute to your precious children,I lost my 16yr old son to SADS in June 2005,only those of us who have experienced these devastating losses know the terrible pain we endure.My thoughts and prayers are with you
(Posted on 2008-03-31 16:20:00 by ) -
I have been wanting to get with you for sometime now and talk about what we can do for ParentHeart Watch in Indiana. My son Josh passed away on Dec.13 2006 and I have have been in a funk lately.
(Posted on 2008-03-29 13:09:00 by )
Your company
My thoughts and prayers go out to you.
I found out a year ago, that I too have Long QT, and had many "seizures" before and after I was pregant with our daughter. I am lucky to be alive. My daughter and my 4 month old grandson were also diagnosed with Long QT syndrome. I am most likely the start of the gene. We are all on medications and doing well.
I am honored to have Dr. Michael Ackerman as my doctor. I know that he wants schools to do ECG on all school children, especially before they start any kind of sports.
Please take care. Sue