09/04/2026
Hello everyone.
I want you to meet Eliza Mae.
She will be the recipient of the Nuremberg Celebration Poker Run on September 5 th.
Spread the word to every single person you know that has a bike and would like to help this beautiful baby girl and her family during their travel and medical treatments.
4 months old today, and by far the bravest, strongest, most beautiful girl I know.
I want to start by saying thank you to everyone for the overwhelming love and support we have recently received. Although I haven’t gotten around to messaging back, I am thankful beyond measure.
I’m sure there’s been some confusion about what is happening. Our sweet Eliza Mae has been in the hospital for nearly three weeks now with a transfer to CHOP a few days ago. During this time she has undergone several procedures, gets daily max labs, and has had many different transfusions. She has officially been diagnosed with HLH, or hemophagocytic lymphohistiocytosis, “a severe and life-threatening immune system disorder where overactive immune cells attack healthy organs and blood cells.” As of yesterday, we also now know that it is primary/genetic, making it even more rare. Depending on how she responds to her newest medication, we could go home as soon as next week, but this journey does not end there. The only “cure” for primary HLH is a bone marrow transplant. Her doctors here have already started the process with a goal to complete transplant at 6 months old. Until that time, if released, we would still need to come here at least twice a week for transfusions and testing. After that she would need to stay in the hospital for a month for the transplant, and then we will be required to be living/staying within an hour of CHOP for 2-3 months after. Just like her blood type, we are trying to “B positive” and at this time just ask for continued love, support, and prayers. Thank you all ❤️
