This little cutie is my nephew Ray.  Ray is seven years old.  He loves Legos, his dog, his brothers, cuddles, and his favorite apex predators: lions.

Over a year ago he was diagnosed with an extremely rare genetic mutation called XLP2 (1 in 5 million cases) which is expected to lead to HLH (hemophagocytic lymphohistiocytosis).  He had been stable on steroids until recently but those steroids are becoming less effective.

Ray has been very strong — going to the hospital every week for a variety of treatments.  But right now there is only one cure for his condition:  a marrow or blood stem cell transplant.

The great news is — if we find a matching donor — his disease can be 100% cured.  But we need to find the right donor. My family and I (including my children) have all been tested to see if we are a match.  Unfortunately, we are not.  While we continue the search for a match for Ray, it is imperative that we also help with research into other cures and treatments for this disease.

This has been a difficult year for us all but there are simple things we can do to put meaningful amounts of goodness and light into the world.

Dr. Rebecca Marsh is an immunologist and transplant physician at Cincinnati Children's who specializes in treating patients like Ray. She is considered an international expert in this field. She is the Clinical Director of the Immunodeficiency  Program, the Clinical Director of the HLH Center of Excellence, the Primary Immunodeficiency Fellowship Program Director, and Co-Director of the Diagnostic Immunology Laboratory. She and her colleagues have the largest clinical laboratory specializing in primary immunodeficiency diagnostics. These physicians not only provide state-of-the-art treatment for patients, but they also lead the field with primary immune deficiency research and new treatment trials. 

But research on rare diseases like Ray's is consistently underfunded. We need your help. Please consider donating to this remarkable team so they may continue their groundbreaking work. 

They are on the brink of new discoveries and, with your support, it is our hope that this team can continue their work finding new treatments for XLP2 so that Ray will live a long and normal life.  He will get back to being able to play with his brothers, to being the mischievous, loving, and goofy soul he is.  He will get to grow up.

All the best, 

Lisa Joy