Holly McNally, Rare Storyteller

Rene King, Rare Storyteller
January 17, 2021
Robyn Deleon, Rare Storyteller
August 8, 2021
Rene King, Rare Storyteller
January 17, 2021
Robyn Deleon, Rare Storyteller
August 8, 2021

Holly McNally

Kabuki Syndrome

Holly McNally resides in western Michigan with her husband, Brandon and their two small children. Both she and her husband have been involved with rare disease treatment and advocacy while working in healthcare but did not learn about Kabuki Syndrome until their son was diagnosed in December 2018. Kabuki Syndrome affects 1 out of 32,000 births worldwide. Kabuki Syndrome affects each person differently but may include: intellectual impairment, low muscle tone, growth delays, heart defects, skeletal abnormalities, speech delays, and hearing impairment.

Holly is excited to partner with Harmony 4 Hope by being a Rare Storyteller and is hopeful her story will open up opportunities for future education and treatment of Kabuki Syndrome.

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