Estella's Wish

Estella's WishEstella's WishEstella's Wish
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  • ABOUT AHC
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    • ABOUT US
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Estella's Wish

Estella's WishEstella's WishEstella's Wish
  • ABOUT US
  • ESTELLA'S STORY
  • ABOUT AHC
  • DONATE

ABOUT AHC

What is It?

Alternating Hemiplegia of Childhood (AHC) is an ultra-rare neurological disorder affecting approximately one in one million children, most often caused by a genetic mutation of the ATP1A3 gene. 


Despite its name, AHC occurs not only in childhood but lasts the patient's entire life. AHC currently has no cure and is associated with devastating outcomes like death, brain atrophy, and sudden and permanent degeneration.


AHC is like having 7 neurological conditions in 1:

Paralysis like stroke

Seizures and spells of reduced consciousness like epilepsy

Seizures and spells of reduced consciousness like epilepsy

Patients experience debilitating periods of paralysis, which can last for days or weeks.

Seizures and spells of reduced consciousness like epilepsy

Seizures and spells of reduced consciousness like epilepsy

Seizures and spells of reduced consciousness like epilepsy

These episodes carry a high risk of rapid, severe, and permanent deterioration. Clinical epilepsy occurs in more than 50% of AHC cases.

Low muscle tone like cerebral palsy

Seizures and spells of reduced consciousness like epilepsy

Low muscle tone like cerebral palsy

Low tone contributes to other serious complications, including the inability to breathe and swallow properly.

Movement problems like Parkinson’s

Movement problems like Parkinson’s

Low muscle tone like cerebral palsy

Patients often experience painful dystonia or involuntary muscle contractions or tremors.

Neurodegeneration like Alzheimer’s

Movement problems like Parkinson’s

Neurodegeneration like Alzheimer’s

Brain atrophy can cause a decline in motor function, learning capacity, memory, and the ability to breathe, eat and swallow as patients reach adulthood.

Behavioral issues like ADHD

Movement problems like Parkinson’s

Neurodegeneration like Alzheimer’s

Patients may also have behavioral issues driven in part by pain, frustration, fear and cognitive dysfunction.

Learning challenges like autism

Learning challenges like autism

Learning challenges like autism

Patients can have cognitive challenges and difficulty with speech, learning, and psychological issues.


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video of an episode

The following is a video of Estella in a dystonic episode. 

Warning: the following images may be disturbing to some people. 

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