How has your condition affected you and your loved one’s lives? Share your experience in the Comments below!
I am a 67-year-old woman diagnosed with Marian’s and long Q-T. I have had 7 living children; 4 full siblings, two half-siblings and a lot of cousins. I am the only one in my family with either of these two genetic wonders.
Unfortunately, I have passed these genes to my children and grandchildren. Two have died from one of these genetic conditions. They are not sure which one took their lives. They were both in their early twenties. They both left behind spouses, young children, and a loving family.
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We were all heartbroken, and as their mother, I carry the guilt that goes with it. I am the one that passed down this gene. Since my daughter’s death, who was a twin, we have all been checked for the Long Q-T. We had already known about Marfans. All of us, except for one child, has had defibrillators and pacemakers put in.
Several years ago, we were on a TV series called Arkansas Children Hospital. My children are grown now with children of their own. I have several grandchildren that show all the signs and are all under close doctor care.
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The thing I learned about a defect in your genes is that it shouldn’t stop you from living a wonderful, happy life. I
would do it all the same again just to relive the memories of my children growing up. Each and every grandchild has been a blessing from God. I will have plenty of questions when I reach the pearly gates myself. The joint pain, lack of lung capacity, the prosthetic mitral valve, blood thinners, long limbs, long feet, and so much more has been a blessing in disguise.
I pray my children, grandchildren, and great-grandchildren will see it the same way. I pray that genetic testing will be done at a reasonable price for my whole family. Most of all, I thank God for this rocky but wonderful adventure that He gave me called life.
