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Chediak-Higashi Syndrome - Samantha's story

Chediak-Higashi Syndrome is another rare type of albinism. It's a kind of cousin disorder to Hermansky-Pudlak Syndrome. The HPS Network, for now, serves as a kind of home for the Chediak-Higashi Association. Below is a really heartwarming story about Samantha, a kid with CHS. If you've ever thought about being a bone marrow donor, you should read this.

We are hoping that later this year we might be able to have a special small conference for families affected by CHS and some of the experts in the field. To be honest, the big issue is funding. Our budget is already stressed - but this just needs to happen. Sometimes you just have to decide something is going to happen, and then figure out how.

The duckling watercolor (featured on the side of the blog) is a modest effort on my part to kick off the Chediak-Higashi Conference Fund.

Here's Samantha's story:


Blood Ties: Samantha Galauskas meets her bone marrow donor

Samantha Galauskas, a four-year old from Illinois and Shaila Lopez, a twenty-something mom from Florida, share a unique bond. Shaila has saved Samantha’s life three times by donating blood stem cells.

Samantha was diagnosed with Chediak-Higashi Syndrome (CHS) when she was 14 months old. CHS is a kind of cousin disorder to HPS. It involves albinism, a mild bleeding disorder much like HPS and an immunodeficiency that, in the cases of kids like Samantha, can lead to fatal infections without a bone marrow transplant. To read the full story, go to: www.hpsnetwork.org.
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