Dear friends and family,
Thank you for visiting my One-to-One Fund and taking the time to learn more about our story. Our son, Bruno Lara, was recently diagnosed with an extremely rare condition called HLH which stands for Hemophagocytic Lymphohistiocytosis, a life-threatening immunodeficiency disease. HLH has been recognized as a RARE disease.
We are asking for your help to educate others about HLH, donate as much or as little as you can to this charity, to assist with my medical treatment, and spread the word about registering for bone marrow donation.
Few people know about HLH. Included among the signs and symptoms of HLH are fevers, rash, anemia, and enlarged spleen. At the onset, patients with HLH are often misdiagnosed with the flu. HLH is so rare, often times the diagnosis is not made in time resulting in the patient's death. Once diagnosed, although HLH is not cancer, the treatment for HLH includes chemotherapy and bone marrow transplant.
Only a handful of hospitals in the world are capable and successful in the treatment of this rare and complex disease. The Cincinnati Children's Hospital is one and the Philadelphia Children's Hospital is another.
Bruno's insurance has denied coverage for the treatment of HLH as it is not "listed" on a list of conditions they cover. Therefore, the estimated cost of treatment without insurance is $1.5M USD and must be made before treatment begins.
Please help us eradicate this horrible condition and please help me keep this gift of life.
You can learn more about me and my condition on the following platforms:
Instagram: @togetherforbruno, FB Groups: Together for Bruno, FB Fan Page: Bruno’s Journey with HLH
What is HLH? https://www.cincinnatichildrens.org/service/h/hlh/about
The Lara Family