My son, Keenan was diagnosed with DC/HH in april 2010. He just turned 3 this October. As of now he is not a candidate for a BMT. He is being treated with monthly IVIG infusions and transfusions as his counts become low, or he becomes symptomatic. He is completely IV nutrition dependant, he can not eat anything at all because of severe colitis. I would be very interested in being contacted or connected with other families involved in DC/HH to hear their stories and how they cope.
Lori Miller
loridiver87@gmail.com
