As part of Myasthenia Gravis awareness month this June, I had the privilege and honor of interviewing a very special individual in our community. Her name is Tracie Abdayem and her story cries out to be heard by the world. This is her MG story.
“My name is Tracie Abdayem and I am the mother of 6 children.
On March 9, 2016 my life changed forever because now I am the mother of a dead child.”
MG Unmasked: Tell me about your connection to Myasthenia Gravis and what MG means to you.
Tracie: My son Andrew was diagnosed with MG in 2009 in Sweden. Symptoms began 8 months earlier. MG =my son. This is what MG means to me: Watching my son suffer every day, feeling his pain, trying to be strong for him when he couldn’t, and never giving up hope for a cure. Then finding him dead and feeling rage at not being able to save him. Now it means doing what ever I can to raise awareness so that hopefully some mother out there doesn’t have to go through this same tragedy.
MG Unmasked: Your son fought against MG in many ways. He continued to live outside of his struggle. What helped him push back against his mg?
Tracie: I guess the #1 thing was music. He studied music percussion. He was a drummer. He was even in a rock band named Myasthenia Gravis. Andrew excelled at everything he did. He was my hero. Sure, he loved video games because he was competitive. He loved sports and resented having to give up baseball. He insisted on continuing marching band even though we couldn’t count how many times he fell on the field in high school.
Thanks to IVIG treatments, he never fell on the college field. He was so very stubborn and refused a walker or scooter. His inner-strength was super human. He loved road trips. The driving force in his life was music. He had only just joined a local support group this last year, and only because I found out there was someone his age in the group. Until then, he felt very alone and lonely.
I always made sure he had as normal a life as possible
MG Unmasked: What do you feel, as someone who lost a child to MG, is missing in awareness?
Tracie: When I first began communicating with MG’ers and support groups, I felt that many of the front-runners were only focusing on the positive and not delving enough into the deadly side of this terrible disease. They made it seem that with treatment you have nothing to worry about. I understand their positive approach but it doesn’t get the attention of the world and it doesn’t save lives. What gets attention is the dark ugly truth, that this disease kills and without a cure people will continue to die.
MG Unmasked: Do you feel that to this day, family and friends understand what happened?
Tracie: They understand better than they ever did while he was alive. For years I talked until I was blue in the face trying to explain over and over just what this disease was. They just didn’t get it. They get it now. My husbands family is from Lebanon, to them, the questions were “who’s fault is this?, why don’t the doctors fix him”?, and ” he looks fine to me, are you sure that’s what he has”? This made my son feel very alone. And at times very angry. These remarks have caused them to all feel great remorse on top of their grief. Andrew was very loved by all. If he had had cancer or diabetes they would have got it. That’s why awareness is so important.
MG Unmasked: What advice would you offer other parents and caregivers of an mg patient?
Tracie: Take each day as it comes evaluate it and adjust to it, other wise you are so overwhelmed. Keep a log of symptoms, PLEASE. Take new symptoms very seriously. Stay positive. The MG’er already feels enough negativity. They need your strength and understanding. Research, research, research. And above all keep their life as normal as possible. Don’t let them stop living and doing the things that make them happy.
MG Unmasked: Finally, what is your greatest dream or vision for the community of MG, both present and future?
Tracie: That everyone understands what MG really is. That enough money could be raised for more research. For better treatments with less side effects. And ultimately a cure. That our loved ones who died from this are never forgotten. That my son’s death makes a difference so that he didn’t die in vain.
I wish to extol sincere condolences to Tracie and her entire family during this time of tragedy and grieving and thank her for her incredible courage to speak out to try and save someone else through her pain. Andrew will always be a special part of the Myasthenia Gravis family, his memory cherished and his struggle shared in the hopes that the world will one day soon pay heed to the reality that is often Myasthenia Gravis.
We love you Tracie and you will always have a family here with us.
May God bless you.
To learn more or to ask questions about Myasthenia Gravis and how it affects the daily lives of patients, and what you can do to help spread the word, please visit us at www.facebook.com/mgunmasked
Written by Rebekah Dorr of Myasthenia Gravis Unmasked.
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