Local girl battles rare, debilitating disease

- A local girl is battling a rare, debilitating disease.  Her mom is fighting to find a cure.

Emilia Schalick is a bubbly, fun loving, affectionate  5-year-old girl with so much personality she lights up any room. Spend a few minutes with her and she’ll melt your heart and you’re a fan forever.

Soon after she was born her mother, Meredith Schalick, noticed something wasn’t quite right. In the recovery room right her eyes were sort of wandering a bit and she was having trouble breathing.

“They brought her to my room about a half hour later she had a blue spell. She stopped breathing altogether,” she told FOX 29.

As Emilia got older she missed some of her developmental milestones.

“We had 7 specialists working with us and we couldn’t figure out what it was,” Meredith explained.

They did brain scans, tests and MRIs but everything came back normal. That’s when Kristy researched online and found an article that sort of matched her symptoms  2 and a half years later, Emilia was diagnosed with alternating hemiplegia of childhood or AHC.

“A rare neurological development disorder that’s characterized by recurrent episodes,” CHOP neurologist Dr. Katherine Taub said.

Dr. Katherine Taub is a neurologist at Children’s Hospital of Philadelphia and she’s been helping Emilia since the beginning.

"It wasn’t until she was working with her occupational therapist at the Children’s Hospital of Philadelphia who witnessed a few episodes of weakness," her mother said.

Emilia goes to CHOP at Virtua in Voorhees for therapy once a week with longtime therapist Kristy Pucci. Like others with AHC, Emilia has episodes of paralysis once or twice a week.

"When we started working together especially in the pool she would have these periods of just becoming completely almost paralyzed. A limp doll."      

Living with AHC is a challenge. It’s a debilitating disease while the disease is diagnosed before a child is 2, kids don’t grow out of it. Emilia’s mom worries about Emilia’s future while she is used to the episodes they are still scary.

These episodes happen once or twice a day for Emilia but when there are changes in weather or she gets over-stimulated they can increase. The episodes can last for a few minutes or hours but if Emilia can sleep she's back to normal.

Emilia's mom, a law professor at Rutgers law school in Camden, is patient, compassionate and determined to raise awareness and find a cure for this debilitating disease.

Despite the fact that Emilia has a potentially devastating and rare disease she triumphs over the limitations of her condition in amazing ways.

If you want to learn more about AHC or support medical research for a cure, please visit  http://ahckids.org/.

 

 

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