Magnolia will be born in January of 2015
She has been diagnosed with Hemophagocytic lymphohistiocytosis (HLH), a very rare and very serious auto-immune disease. This was found out through a CVS (Chorionic villus sampling) which was done in the 12th week of pregnancy. There is no other cure than a bone marrow transplant for baby Magnolia.
This has devastated our family, We have previously had two children diagnosed with this same life threatning disease. Big brother Isaac, soon to be 9 is a survivor having undergone chemotherapy, dozens of medications/surgeries and a life saving bone marrow transplant which he had at 9 months old. Our second child (Leland) saddly passed away from the disease in 2012 at 39 weeks gestation.
We will soon begin this journey once again and while we are scared to death of the outcome, we do have hope and faith that Magnolia will respond well to treatment and be cured of this horrible cancer like disease. We encourage you to follow her story and share our updates with as many people as you can. This ensures that our daughter is supported but even more important is that it raise awareness for other patients and their families.
WHAT IS HLH?
She has been diagnosed with Hemophagocytic lymphohistiocytosis (HLH), a very rare and very serious auto-immune disease. This was found out through a CVS (Chorionic villus sampling) which was done in the 12th week of pregnancy. There is no other cure than a bone marrow transplant for baby Magnolia.
This has devastated our family, We have previously had two children diagnosed with this same life threatning disease. Big brother Isaac, soon to be 9 is a survivor having undergone chemotherapy, dozens of medications/surgeries and a life saving bone marrow transplant which he had at 9 months old. Our second child (Leland) saddly passed away from the disease in 2012 at 39 weeks gestation.
We will soon begin this journey once again and while we are scared to death of the outcome, we do have hope and faith that Magnolia will respond well to treatment and be cured of this horrible cancer like disease. We encourage you to follow her story and share our updates with as many people as you can. This ensures that our daughter is supported but even more important is that it raise awareness for other patients and their families.
WHAT IS HLH?
- Hemophagocytic lymphohistiocytosis (HLH), a rare and very serious auto-immune disease which causes severe inflammation and attacks major organs. Untreated it is fatal.
- Familial hemophagocytic lymphohistiocytosis, (Familial) meaning genetic which is the type Magnolia has. The immune system produces too many activated immune cells (lymphocytes) . This overactivation of the immune system causes fever and damages the liver and spleen, resulting in enlargement of these organs.
- When a family has a child with FHL there is a 25% chance of other siblings having the same illness. The danger of FLH resides in the necessity of a bone marrow transplant in order for the patient to be cured.
- Familial hemophagocytic lymphohistiocytosis occurs in approximately 1 in 50,000 individuals worldwide.