Our Angel with Langerhans Cell Histiocytosis
Patient Stories of Hope and Inspiration ‘Meet Aamari’ Aamari Braijon Culbreath, was born on May 4, 2008, with lesions from head to foot. After spending 10 days in the NICU, he was released home with a diagnosis of Langerhans Cell Histiocytosis (LCH) of the skin. During the next two months, Aamari visited the emergency room [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET JOSEPH!’ It was December 28, 2008 when we saw the lump in his throat. It was small, but very obvious. Someone finally took me seriously that something was seriously wrong and he was admitted to the hospital. On New Years Eve, Joseph went in for a biopsy. A few days later on January 5, 2009, [...]
The Tour de France and Testicular Cancer
Testicular cancer is rare, and bone marrow transplant services are difficult to access for advanced stage tumors.
Niemann-Pick Disease: An Update on Joseph Colton
Our 4 year old son Joseph Colton has Niemann-Pick disease type A/B. The Niemann-Pick (NP) diseases belong to a family of 40+ inherited disorders identified as lysosomal storage diseases or LSDs. There are two distinct sub-families of Niemann Pick diseases. NPA and NPB diseases are caused by defects in the acid sphingomyelinase gene (ASM) on [...]