Beneath her black riding helmet, you can’t see the “W” shaped scar that partially circumnavigates her skull. It’s several inches long and shaped like the symbol of Wonder Woman…And Alexandria Weideman certainly is a wonder.
By Tracy Campion.
Beneath the grateful smiles of her family, you can’t see the pain and fear of almost having lost their only child. But the Weidemans faced Allie’s rare medical condition with courage, perseverance, candor, and hope.
Allie has a rare form of epilepsy. Her first seizure happened on St. Patrick’s Day in 2015. Allie, then only 9, was terrified and disoriented. Since her first seizure, she fought through thousands more, ranging from Absence seizures (previously referred to as petit mal seizures, which can be so brief that they often go unnoticed) to Grand Mals. Allie underwent two Vagus Nerve Stimulation (VNS) surgeries with no relief – her seizures continued to occur unabated. The VNS is essentially a pacemaker for the brain, but this surgery was unsuccessful for Allie.
Allie’s case is unique; her severe epilepsy defied all textbook definitions…And without a radical procedure called a brain resection, wherein the portion of the brain implicated in the seizures is removed, she was facing the very real risk of dying from her condition. Every year, one in 1,000 people with epilepsy will die from a condition called Sudden Unexpected Death in Epilepsy (SUDEP). Allie’s seizures had been uncontrollable for the past two years, and for someone experiencing seizures at her rate, that risk jumps to one in 150.
Allie had her first brain surgery at Seattle Children’s over Thanksgiving – and that’s where her family spent their holiday, filled with gratitude that they could finally do something for her. This surgery was an invasive EEG, which placed wires directly into her brain. During three days at Seattle Children’s, she experienced over 250 seizures.
Allie’s mother, Sarah, is an Olympia, Washington-based horse trainer who writes the Back to Basics Horsemanship column for Pet Connection Magazine. While the surgical team at Seattle Children’s decided whether to perform Allie’s surgeries, Sarah wrote a heartbreaking letter to them. In part, it reads:
“Thank you for taking the time to consider Allie for the epilepsy surgery. I know you are debating the risks and benefits of what this surgery means for Allie on the medical side, but I wanted to share with you what the seizures have taken from Allie and what this surgery can mean for her, despite the risks.
“…Over the past two years, we have tried countless medication combinations, had neurosurgeons look at us and tell us that they have never seen a reaction to the VNS like what Allie has shown, and had countless doctors say they have no idea how Allie is still functioning with the number of seizures she is having.
“Seizures have destroyed her life. She was involved with Girl Scouts and now is unable to participate in those events, as it is unsafe for her. The seizures keep her from competing in equestrian sports or pleasure riding, as seizing on horseback is unsafe.
The stress of the seizures and the medication interactions has caused severe mood swings and aggression. Having to call paramedics and police to help restrain and transport your 11-year-old daughter because she is banging her head on the wall screaming she wants the seizures to stop or she will kill you is not a fun moment.
“Allie has aspirations to become a fashion designer and shows great promise. Currently her seizures have affected her motor skills to the point that sketching is difficult, let alone running her sewing machine…something that a year ago she was easily able to do.
“She can no longer read a simple book and tell you what she has read. Even if we read to her, she cannot remember it. Friendships are hard for Allie as she is unable to participate in the majority of the events since she is seizing so frequently that it is unsafe to do so.
“We understand the risks are great…there are always major risks with surgery, regardless of what it is. We have hit the point that there are not really any medication options for Allie. The VNS causes her pain if turned up and she is seizing multiple times per hour every day. She has fought so hard to win her battle against epilepsy and is starting to lose strength.
“The risks are high, but the risks of losing her are higher if we do not try to do something.”
Only one month ago, Allie’s seizures were stealing her away from the world, one terrifying episode at a time. Allie was suffering from hundreds of seizures every day, debilitating episodes that negatively influenced every part of her life. Walking, sleeping, and her favorite activity, horse riding – all were affected by the seizures that punctuated every part of her day. Without this radical surgical intervention, Allie’s parents, Sarah and Rob, feared that she would succumb to her condition. But they never gave up on the quest to save their daughter, and neither did the surgical team at Seattle’s Children’s Hospital. After years of searching for a cure, Allie finally underwent a brain resection in early January, and she has been seizure-free ever since.
Allie’s story was beautifully covered by KOMO reporter Pete Combs. You can see it here.
Today, Allie is happy, healthy, and riding her horse, Zippy, again – and he couldn’t be happier. Zippy, a retired racehorse who is enjoying his second career as Allie’s riding partner, left his first job when he was literally lying down on it: the gates would open, he would take several steps, and then he would lie down on the dirt, demonstrating that he didn’t want to run. Now, Zippy does the same thing for every rider except for Allie. He would do almost anything for her.
Prior to her surgery, Allie and her family were on a trail ride. Allie began to have a seizure, and rather than panicking, Zippy stood calmly, turning his head toward Sarah and Rob. He remained steadfast until her seizure had subsided and he continues to support her, physically and emotionally.
As of this writing, Allie remains seizure free. She can finally ride her horse, walk, and sleep the night through without the risk of interruptions from seizures. This bright, happy, talented, fiercely independent little girl can finally do everything that a normal 11-year-old girl can do.
While her family is fortunate to have medical insurance, they have struggled with the added expenses of driving from Yelm to Seattle Children’s and back, often multiple times each week, and from missing so much time from work. Allie’s father, Rob, used all of his paid time off for Allie’s medical care and then tore his rotator cuff, for which he recently had surgery.
This family has struggled for so long and desperately needs help to regain their financial stability. Please consider helping them as they journey toward a seizure-free life. Because even Wonder Woman needs some community support at times!
To help them, please visit: www.gofundme.com/pbwz2-allies-medical-expenses