Tristan’s Story and The Tristan Project is the continued saga of my beautiful son Tristan.  My child Tristan was diagnosed at seven months of age with a rare genetic metabolic disorder called Albright’s Hereditary Osteodystropy (AHO), which can be associated with bone growth within his skin (osteoma cutis), developmental (severe speech delays associated with PDD-NOS, a form of Autism Spectrum Disorder (ASD)) and growth delays as well as in his case the relatively rare metabolic disorder called pseudohypoparathyroidism type 1a.  The links below are updates I provided to family and friends throughout the years.  I provide them here for others who discover themselves along a similar pathway.

The Tristan Project Chapters

• The Early Struggles

• The Horror and Relief of the Initial Pathology Report

• The First Protector: The Tristan Project is Born

• The Second Protector and Genetic Testing

• The Third Protector and New Hope in Philadelphia

• Developmental Delays and the Start of the Therapies

• Developmental Testing at Kennedy Krieger Institute

• Second Visit with Dr. Kaplan

• The Formal Autism Diagnosis

• Gluten-Free Diet Change for Tristan

• The Fourth Protector:  Albright Hereditary Osteodystrophy Specialist

• Results of the Gluten Free Diet Change

• Tristan’s Endocrinology Update

• Growth Hormone Testing and Results

• Developmental Update

• An Update on Tristan

• An Early Christmas Gift for Our Family

• The Start of Growth Hormone Therapy

Updates to be completed

Neurocognitive Testing

The First Year of Growth Hormone

The Second Year of Growth Hormone

Tristan Starts Kindergarten