Liam’s story                   

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GNAI1 is an extremely rare neurodevelopmental disorder. Liam is one of fewer than 30 known people in the world with this diagnosis.

GNAI1 comes with a range of complex symptoms, including:

  • Epilepsy and apneic seizures

  • Low muscle tone (hypotonia)

  • Developmental delays

  • Feeding challenges

  • Ongoing respiratory complications

Liam is only one of 26 people in the world to be diagnosed with GNAI1-NDD, so research is slim. Most health care professionals are not educated, and his prognosis is unknown.

In his first year alone, Liam has endured:

  • Multiple PICU stays

  • Oxygen support, viral complications, and airway surgery

  • Multiple MRIs, VEEGs, and sleep studies

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More about GnaI1-NDD

GNAI1 is the name of a specific gene. Genes are the instruction manuals for our bodies. The GNAI1 gene provides the blueprint for a protein that acts like a cellular messenger, ensuring signals are passed correctly within cells, especially in the brain.

When the GNAI1 gene has a change, the messenger protein doesn't work as it should, which disrupts normal cell communication.

Key Features of GNAI1-NDD

Symptoms can vary, but common characteristics include developmental delay, intellectual disability (ranging from mild to profound), low muscle tone (hypotonia), and seizures (epilepsy).

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