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The HPS SPOTLIGHT is a place to share and learn.  Everyone’s experience with HPS is unique and by sharing we allow others to learn and connect.  Visit our HPS SPOTLIGHT page and see who is in the spotlight this month!

Link to HPS SPOTLIGHT page

Addy’s Story (Adalynn)

When we first laid eyes on our baby girl Adalynn (Addy) it’s safe to say we, two dark haired parents were shocked to see our daughters Snow White hair. As parents we knew it was strange that her hair was so light but we thought very little of what we thought was a...

Amber’s Story

My rare journey:  Well, let's start with not having a lot of answers from physicians and being on an emotional roller-coaster. I was 11 weeks old when I got the diagnosis of Hermansky-Pudlak Syndrome from my ophthalmologist Dr. Hurdle. After a 28 day hospital...

Meeting the Mother of My Lungs

Nancy Lee has been a board member of the HPS Network for many years. In 2011, she received a lung transplant. Watch the video from News 25 - April is National Donate Life Month An estimated 22 people die each day waiting on a life-saving organ transplant according to...

Two of a Kind

Candice and Crystal Sipe’s Story Identical twins Hema and Rama arrived in Phoenix, AZ. August 3rd, 1981 from Hyderabad India.  They had just turned a year old August 1st.  Hema weighed 12 pounds, Rama 13 pounds, very small for a one year old child. Since they were...

Hope Comes in a Capsule

Heather Kirkwood’s Story Heather Kirkwood’s mother always suspected her children had a bleeding disorder. During their childhood Heather and her younger brother were tested four different times for suspected bleeding disorders, but every time the tests came back...