Hannah Marsh, HLH survivor
Hi there, my name is Hannah. In June 2008, I woke up one morning with a severe nose bleed, lots of bruising and petechiae (purple and red spots) all over my body. This meant that my capillaries were leaking into my skin. I was first sent to the ER at Sarasota Memorial Hospital and was found to have a critical platelet level of 19, meaning that my body didn’t have the ability to clot which could have resulted in internal bleeding. Four hours later, we arrived at All Children's Hospital in St. Petersburg, Florida and my platelet level was one (1). Normal levels are between 150-400. My liver was shutting down, I had an enlarged spleen and all my blood counts were critically low.
After many lab tests, plus a biopsy of my bone marrow and liver, I was diagnosed with a disease called Hemophagocytic Lymphohistiocytosis, also known as HLH. It is a rare disease of the immune system and affects one out of 1.2 million children. The short version of HLH is that it originates in your bone marrow and it sends out signals that there is an invasion in the body. These cells start to destroy your own red blood cells, white blood cells and platelets. After these cells attack the blood cells, then they start to attack the spleen, liver and the central nervous system. HLH is fatal unless treated with chemotherapy and a bone marrow transplant.
My Mom did some research and found one of the best doctors in the country that specializes in HLH and we went to Cincinnati Children's Hospital in July 2008. I was admitted immediately and they started the 2004 HLH Protocol, but I didn’t respond to the treatment and my bone marrow stopped working completely. The only cure would be to have a bone marrow transplant.
Unfortunately there was no match for me in my family, so the search began to find a donor, but there was no match for me in the US either, so they kept searching and found one donor who was my perfect match out of 14 million donors in the world. My transplant took place the day before my 6th birthday and followed by 18 months of isolation. I went back school in March 2010. Just two years later, in March 2012, we had the opportunity to finally meet my donor, when he came all the way from Germany to surprise me. Because of the gift he gave me, I am now 20 years old and a Sophomore at the University of Cincinnati studying Health Sciences.
Before I had my bone marrow transplant, I was transfusion dependent for 4 months receiving blood products every couple of days. My mom, Kelly, made a promise that she would do all she could to raise awareness of my disease and the importance of becoming a bone marrow donor and the donating blood.
Each one of us has the power to make a difference . . . Donate blood regularly and if you are between the ages of 18-44, then join the national registry at https://join.bethematch.org/s/. You could potentially save someone’s life the way my donor saved mine! To learn more about my story and meet my donor, please click the video link below. Also, if you would like to take part in our Annual Toy Drive, please click here.
Hannah Marsh, HLH Survivor
Blood Donation and Marrow Registry Advocate
After many lab tests, plus a biopsy of my bone marrow and liver, I was diagnosed with a disease called Hemophagocytic Lymphohistiocytosis, also known as HLH. It is a rare disease of the immune system and affects one out of 1.2 million children. The short version of HLH is that it originates in your bone marrow and it sends out signals that there is an invasion in the body. These cells start to destroy your own red blood cells, white blood cells and platelets. After these cells attack the blood cells, then they start to attack the spleen, liver and the central nervous system. HLH is fatal unless treated with chemotherapy and a bone marrow transplant.
My Mom did some research and found one of the best doctors in the country that specializes in HLH and we went to Cincinnati Children's Hospital in July 2008. I was admitted immediately and they started the 2004 HLH Protocol, but I didn’t respond to the treatment and my bone marrow stopped working completely. The only cure would be to have a bone marrow transplant.
Unfortunately there was no match for me in my family, so the search began to find a donor, but there was no match for me in the US either, so they kept searching and found one donor who was my perfect match out of 14 million donors in the world. My transplant took place the day before my 6th birthday and followed by 18 months of isolation. I went back school in March 2010. Just two years later, in March 2012, we had the opportunity to finally meet my donor, when he came all the way from Germany to surprise me. Because of the gift he gave me, I am now 20 years old and a Sophomore at the University of Cincinnati studying Health Sciences.
Before I had my bone marrow transplant, I was transfusion dependent for 4 months receiving blood products every couple of days. My mom, Kelly, made a promise that she would do all she could to raise awareness of my disease and the importance of becoming a bone marrow donor and the donating blood.
Each one of us has the power to make a difference . . . Donate blood regularly and if you are between the ages of 18-44, then join the national registry at https://join.bethematch.org/s/. You could potentially save someone’s life the way my donor saved mine! To learn more about my story and meet my donor, please click the video link below. Also, if you would like to take part in our Annual Toy Drive, please click here.
Hannah Marsh, HLH Survivor
Blood Donation and Marrow Registry Advocate
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