Wrayanne: Lennox-Gastaut syndrome

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Wrayanne was a first time mom when she learned her daughter, Morgan, was born with a rare severe epileptic seizure disorder. Wrayanne was candid about her struggles and her hopes for Morgan’s future.

Lennox-Gastaut syndrome

Something is wrong

It wasn’t until Morgan was a few months old that her mom, Wrayanne, noticed something wasn’t quite right with her daughter. She recalls, “I was seeing certain things. She was a little behind with milestones, but I was a first time mom, so you know, I didn’t think much of that”

When Morgan started having crying spells where she was inconsolable and an “interesting eye-rolling motion” as Wrayanne called it, Wrayanne knew something was wrong.

Pediatrician suspects abnormalities

Wrayanne contacted her pediatrician, who already suspected something was wrong, referred them to a neurologist Wrayanne received the diagnosis of Lennox-Gastaut syndrome. A rare severe seizure disorder that causes cognitive impairment, multiple seizure types and having different brain waves.

When Morgan was first diagnosed, there was no internet for Wrayanne to research Morgan’s diagnosis. At first, Wayanne was under the impression that if Morgan took medication, her condition would go away and she would be fine.

Wrayanne later learned that Morgan’s condition was lifelong and she was not going to get better.

Love is never lacking

“I wish you could meet her..She is bubbly, and smiley, and sweet, and she loves her people. If she loves you you know it..she walks into a room and you can just feel her sweet energy, and wherever she is, people fall in love with her.” Wrayanne shared.

Her younger brother feels the same way, when he was younger he would say, That’s my sister, she’s special.” He is very kind and sweet towards her and is very willing to step in and help Wrayanne.

Voicing your opinion to medical professionals

For Morgan’s future, Wayanne just wants her to be happy and healthy. She talked about finding the balance that works for your child and your family. She had a doctor who once told her “I can stop her seizures completely, but she’ll be a zombie.”

Keeping in mind that medical professionals look at your child differently than you do, Wrayanne said, “When it comes to the medical professional, you have to be strong..they want to treat that disorder. They want to treat it, they want to cure it, they want to stop it.”

Plans for the future

Like most parents who have children with disabilities, Wrayanne hopes she outlives Morgan. “And I’ve even started, at this late age, taking better care of myself, so that my longevity will be there. You know, I am going to have to lift her, and just be there for her, and feed her, and all of those things that she’s going to need.”

Wrayanne knows that there is no one else who could take as good of care of Morgan as she does. She wants to be there for her as long as she is physically able to.

Dealing with the public’s view or Morgan

Wrayanne shared that when Morgan was younger, she struggled with taking Morgan into public. She was angry with people staring. She shared, “I learned over the years that people aren’t being negative, that was me when I was younger. I was defensie. I understand now.”

She would rather people approach her and ask questions, questions mean they want to know more about Morgan.

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