Leilani's Angels-HLH Awareness
Donation protected
On May 7, 2014, my 1 year old daughter, Leilani, was admitted to the hospital after many doctors visits for persistent fevers and an
unexplainable rashes. Many discussions with doctors proved to me that this was no ordinary case. After having to endure watching my daughter go through four surgical biopsies, countless X-rays and MRI’s, and numerous genetic tests, the doctors at the original hospital failed to provide a diagnosis, or even an idea of an answer. As her mother, I was very concerned and frustrated and after several weeks demandedthat Leilani be transferred to another hospital. At the second hospital (Nemours), Leilani was diagnosed with "Hemaphagocytic Lymphohistiocytosis” (HLH).
HLH is a rare life-threatening disease, usually occurring in young
children, in which the body’s immune system does not work properly. In HLH, white blood cells attack other blood cells in the body causing abnormal cells to form and spread into the spleen, liver, and other organs (causing them to enlarge). In Leilani’s case, both her spleen and liver have become enlarged over the past few months and as a result, she has been re-admitted to Nemours Hospital three additional times. In each hospital stay, Leilani is intubated for weeks at a time, with her breathing controlled by ventilators. Two weeks ago, while being prepared for an MRI, Leilani went into cardiac arrest. Since then Leilani’s recovery has been very slow.
Presently, the doctors in Florida have exhausted all known treatment options and can only keep her stable with weekly chemotherapy and several drugs, they still do not have a definitive treatment plan. I would love for Leilani to beat/recover from HLH. In order to do this we need to travel to Cincinnati Ohio Children's Hospital to the HLH Center of Excellence and also Maryland to the National Institute of Health for further consultations, research and genetic mutations testing. None of the consultations and research will be funded by our insurance. Although I work when I am able, as a single parent, cannot afford the specialized treatment Leilani needs to recover. Please help us fund the travel and treatment that Leilani needs to get better.
unexplainable rashes. Many discussions with doctors proved to me that this was no ordinary case. After having to endure watching my daughter go through four surgical biopsies, countless X-rays and MRI’s, and numerous genetic tests, the doctors at the original hospital failed to provide a diagnosis, or even an idea of an answer. As her mother, I was very concerned and frustrated and after several weeks demandedthat Leilani be transferred to another hospital. At the second hospital (Nemours), Leilani was diagnosed with "Hemaphagocytic Lymphohistiocytosis” (HLH).
HLH is a rare life-threatening disease, usually occurring in young
children, in which the body’s immune system does not work properly. In HLH, white blood cells attack other blood cells in the body causing abnormal cells to form and spread into the spleen, liver, and other organs (causing them to enlarge). In Leilani’s case, both her spleen and liver have become enlarged over the past few months and as a result, she has been re-admitted to Nemours Hospital three additional times. In each hospital stay, Leilani is intubated for weeks at a time, with her breathing controlled by ventilators. Two weeks ago, while being prepared for an MRI, Leilani went into cardiac arrest. Since then Leilani’s recovery has been very slow.
Presently, the doctors in Florida have exhausted all known treatment options and can only keep her stable with weekly chemotherapy and several drugs, they still do not have a definitive treatment plan. I would love for Leilani to beat/recover from HLH. In order to do this we need to travel to Cincinnati Ohio Children's Hospital to the HLH Center of Excellence and also Maryland to the National Institute of Health for further consultations, research and genetic mutations testing. None of the consultations and research will be funded by our insurance. Although I work when I am able, as a single parent, cannot afford the specialized treatment Leilani needs to recover. Please help us fund the travel and treatment that Leilani needs to get better.
Organizer
LaQuitta Brenaye Destin
Organizer
Orlando, FL
