Five-year-old Estella Henderson was not going to let anything come between her and her preschool graduation – not even a partial paralysis episode. Estella was born with a mutation of her ATP1A3 gene, which is a degenerative and rare condition. One of the main affects of this condition is leading to alternating hemiplegia of childhood or AHC, which causes Estella to have “episodes of paralysis, dystonia, and nystagmus,” according to a website created by her family to raise awareness. The episodes can come without warning, causing Estella to go from “a happy, playing, dancing four-year-old to a helpless, paralyzed, dystonic child screaming in pain. During these AHC episodes, Estella loses her ability to walk, crawl, swallow and even hold her head up.” Estella’s mother, Lacey Henderson, spoke with news outlets and shared that her daughter was diagnosed with her condition as a baby. Estella experienced multiple seizures, leading to many near-death emergency room visits as an infant. Doctors could not pinpoint what was causing Estella to experience these episodes, which led to genetic testing that finally revealed the gene mutation. “ATP1A3-related neurologic disorders represent a clinical continuum in which at least three distinct phenotypes have been delineated: rapid-onset dystonia-parkinsonism (RDP); alternating hemiplegia of childhood (AHC); and cerebellar ataxia, areflexia, pes cavus, optic atrophy, and sensorineural hearing loss (CAPOS),” according to the National Library of Medicine.
As Estella has grown older, her mother Lacey is able to spot the telling signs that Estella is about to have a paralysis episode. On the day of her preschool graduation, Lacey said that she was able to see the beginning signs of dystonia and paralysis in Estella’s arm and right side as she went on the school bus. Each episode can last up to nine days, causing brain degeneration with each one. Lacey described the episodes saying that they are usually incredibly painful for Estella, often leaving her screaming in pain. Lacey opened up about Estella’s episode on the day of her preschool graduation saying, “I was devastated. I was thinking, ‘Why can’t she just have this day?’ I expected she would be in her wheelchair by the time we got to the school for graduation.” She continued by saying, “One arm wasn’t working, her leg was dragging and she was fighting to stay upright. Even though half her body didn’t work during the entire program, her body was shaking and she was pushing herself to the max, she had a look of determination on her face. I was so proud of her.” Estella’s strength is an inspiration to her family, her mother saying, “Every day she gets up and doesn’t know what her body is going to do to her and she is still so full of life. I admire her so much.”
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