Jessica’s Story

One day, Jessica was a typical healthy and active teenager. That changed suddenly one evening when she felt her heart racing, she had a headache, was nauseous, and her legs were hurting and were so weak she was shaking and could hardly stand. At the local Emergency Room, her family learned that Jessica’s potassium level was very low and that she had tachycardia, which is where the heart beats faster than it should.  But they didn’t know why.

Jessica continued to have similar attacks, her symptoms were worsening, and she was having more and more difficulty with ordinary daily activities. But none of the tests at her local hospital were revealing the cause.

When Jessica’s parents traveled to Nationwide Children’s Hospital they found more than friendly faces and expert care – they found an answer too. “This was the start of my journey with Hypokalemic Periodic Paralysis. I am a zebra. I have a rare medical condition. Doctors are trained that ‘If you hear hoof beats, think horses not zebras,’” says Jessica.

Hypokalemic Periodic Paralysis is a condition that causes episodes of extreme muscle weakness or paralysis. There is no cure. Jessica can experience paralysis in any muscle in her body including the diaphragm and the attacks can drop her potassium level low enough to cause life-threatening breathing problems or heart arrhythmia.

“I continue to struggle daily and I recently had another attack which also resulted in injury for the first time. This isn’t how I imagined my first days or months of being 15 years old, but I will fight like a girl and proudly say I am a zebra,” says Jessica.

As a leading national neurology program, our specialists are experts in treating a broad range of pediatric neurological disorders. But we don’t stop there. Nationwide Children’s Hospital is home to renowned expertise in highly specialized areas such as epilepsy, sleep medicine, neuromuscular disorders, stroke, intracranial hypertension, headache, neurodevelopmental disabilities and more. We participate in clinical and basic-science research programs, and our faculty has prominent roles in local, national, and international organizations.

Jessica adds, “We must travel 156 miles round trip to visit Nationwide Children’s Hospital.  This hospital changed my life. They gave me a plan and a diagnosis I couldn’t get anywhere else.  With my disease being so rare there aren’t many people I can turn to who understand what I am going through, but I felt “at home” when arriving at Nationwide Children’s.”

Jessica loves drawing, music, photography, and spending time with family and friends.  But most of all, Jessica loves karate. While her disease currently prevents her from competing in contests, she trains at the “The Academy of Martial Arts Studies” in Findlay, Ohio. Jessica knows firsthand what it is like to fight hard and will be a true inspiration for the participants who pass through her mile at the Nationwide Children’s Hospital Columbus Marathon & ½ Marathon.

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http://nchflutter.wpengine.com/wp-content/uploads/2016/07/Jessica-Actonx300.jpeg

One day, Jessica was a typical healthy and active teenager. That changed suddenly one evening when she felt her heart racing, she had a headache, was nauseous, and her legs were hurting and were so weak she was shaking and could hardly stand. At the local Emergency Room, her family learned that Jessica’s potassium level was very low and that she had tachycardia, which is where the heart beats faster than it should.  But they didn’t know why.

Jessica continued to have similar attacks, her symptoms were worsening, and she was having more and more difficulty with ordinary daily activities. But none of the tests at her local hospital were revealing the cause.

When Jessica’s parents traveled to Nationwide Children’s Hospital they found more than friendly faces and expert care – they found an answer too. “This was the start of my journey with Hypokalemic Periodic Paralysis. I am a zebra. I have a rare medical condition. Doctors are trained that ‘If you hear hoof beats, think horses not zebras,’” says Jessica.

Hypokalemic Periodic Paralysis is a condition that causes episodes of extreme muscle weakness or paralysis. There is no cure. Jessica can experience paralysis in any muscle in her body including the diaphragm and the attacks can drop her potassium level low enough to cause life-threatening breathing problems or heart arrhythmia.

“I continue to struggle daily and I recently had another attack which also resulted in injury for the first time. This isn’t how I imagined my first days or months of being 15 years old, but I will fight like a girl and proudly say I am a zebra,” says Jessica.

As a leading national neurology program, our specialists are experts in treating a broad range of pediatric neurological disorders. But we don’t stop there. Nationwide Children’s Hospital is home to renowned expertise in highly specialized areas such as epilepsy, sleep medicine, neuromuscular disorders, stroke, intracranial hypertension, headache, neurodevelopmental disabilities and more. We participate in clinical and basic-science research programs, and our faculty has prominent roles in local, national, and international organizations.

Jessica adds, “We must travel 156 miles round trip to visit Nationwide Children’s Hospital.  This hospital changed my life. They gave me a plan and a diagnosis I couldn’t get anywhere else.  With my disease being so rare there aren’t many people I can turn to who understand what I am going through, but I felt “at home” when arriving at Nationwide Children’s.”

Jessica loves drawing, music, photography, and spending time with family and friends.  But most of all, Jessica loves karate. While her disease currently prevents her from competing in contests, she trains at the “The Academy of Martial Arts Studies” in Findlay, Ohio. Jessica knows firsthand what it is like to fight hard and will be a true inspiration for the participants who pass through her mile at the Nationwide Children’s Hospital Columbus Marathon & ½ Marathon.

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