Patient Stories

Whether you are a caregiver, family member, speech therapist, pediatrician, or other healthcare provider interested in AGU, learn more by reading these stories from families living with AGU.

Hope Lost and Found

Hope Lost and Found

In the years before and after their son Oliver’s AGU diagnosis, Mika and Pia have not given up on their search for information. Through their emotional journey, they’ve experienced both ups and downs in parenting a son with a rare disease.

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Finding Courage Through Community

Finding Courage Through Community

Niina’s world was crushed with the weight of two AGU diagnoses when her sons were young. She and her family initially faced the uncertainty of the boys’ disease alone; they have since found a community’s love and support to guide them.

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A Different Kind of Future

A Different Kind of Future

Eeva is the foundation chair of Suomen AGU ry in Finland. She shares her journey with LivingAGU below, recalling her daughter Kaisa’s diagnosis and their experience since.

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