About this site

This site is dedicated to our little boy, Clark.

He was born a mild hemophiliac, but in the spring of 2014 at the age of 14 months, he was diagnosed with a second condition known as Aplastic anemia.  In researching the root cause of the Aplastic anemia, it was revealed that Clark actually had a separate disease known as Dyskeratosis Congenita (aka DKC, or DC).

DKC is a genetic disorder that can cause a multitude of other diseases.  Aplastic Anemia (bone marrow failure), is a typical symptom of having DKC.  In the summer of 2014, Clark underwent a Bone Marrow Transplant (BMT) in an attempt to cure the Aplastic anemia.  As of the spring of 2015, he is in the last stages of recovery from the BMT and progressing well.

Hemophilia and DKC are completely unrelated.  The chances of getting DKC is 1 in a million. The chances of having both, are near impossible.

How does one get DKC?  No one knows.  Each day we continue to learn more about the causes of his condition. Researchers, as of the spring of 2015, have only just identified the root genetic cause of DKC. A cure is still well beyond the horizon, if it exists at all.

As such, we have dedicated this space to update loved ones as well as provide insight (and hopefully some education) for other parents who may have the unfortunate luck of dealing with this in their own children.

If you have a child with one or both of these conditions, we would definitely like to hear from you.  Please don’t hesitate to reach out with questions or concerns. We’ll be happy to support you in any way we can.


4 Replies to “About this site”

  1. Thank you for the time you have spent sharing your story. It helps us understand the immensely complicated issues you are facing. Please let us know if there is any way we can offer our assistance.

  2. Hi- we came across your website and wanted to let you know about our support group for families with DC. We also are working with UCSF on an International Patient Registry for families with DC. Once a month, we host family chats for families to meet other families and hear DC experts. Hope you can join us sometime. Best regards, Lisa (Board Member, Treasurer)

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