Tegan's HPS Diagnosis | Out of Order Living

Tegan's
HPS Diagnosis

This is the story of our son Tegan who has Hermansky-Pudlak Syndrome. This is our journey with his diagnosis.

HPS Diagnosis

September 25, 2016 Tegan was born with vibrant white hair, nystagmus, light sensitivity and difficulties with vision. It was known at...

Feeling Equipped

September 28, 2016 On Monday, Jodi and I had the opportunity to meet with Tegan’s hematologist without Tegan being there. This was our...

Becoming the Experts

October 10, 2016 1 in 1,000,000. We say this to make someone feel special, unique, irreplaceable. Now it just feels like…oh crap, that...