Kaiden Thomas - Familial HLH Diagnosis

This is a new page for my son Kaiden Thomas who was diagnosed with Familial (Primary) HLH in October. HLH is a rare & life threatening disease which only can only be cured by a bone marrow transplant. Kaiden & I are currently staying in Philadelphia while we await a bone marrow transplant in about 6-7 weeks. Anything donated will be used for travel expenses, food, bills & anything Kaiden needs during our time away from home. Kaiden is seen in clinic at CHOP three times a week for chemotherapy & transfusions. Kaiden has 3 siblings back home & his father who are all missing him very much. This has been such a hard time for us all as Kaiden was hospitalized in the beginning of October & was just able to go to outpatient in November. Kaiden has a long road ahead of him but he’s our little warrior & we have faith he can beat this disease! ♥️ 

*A little back-story on how we found out Kaiden had HLH… Kaiden was first seen in the ER at the beginning of October for a fever (Mama Instincts) told me to take him. We started at UPMC, Muncy & from there they transferred us to Williamsport UPMC… they couldn’t really get things figured out there & at first were questioning cancer but they knew he had E-Coli. It wasn’t until we were life-flighted to Geisinger, Danville that we found out Kaiden was septic from how bad the E-Coli infection was. We were there for the whole month of October getting treatment & once the E-Coli/Sepsis was treated & gone but Kaiden was still having other symptoms they knew something else was going on… that’s when they mentioned HLH to us. They did blood work on Dad & I & also did a lumbar puncture on Kaiden to test his bone marrow for HLH. The genetic testing came back confirming Kaiden had HLH before they even got to test his bone marrow. Kaiden’s HLH is genetic & a gene mutation (UNC13D). So once he was confirmed to have HLH they life-flighted Kaiden again to CHOP (Philadelphia) & we have been here since the beginning of November. Now we are waiting a possible transfer of care to the HLH Center of Excellence at Cincinnati Children’s for the best care for Kaiden’s condition! I want to thank all for their generosity during this time as our family fights beside Kaiden to beat this disease! I will post updates as they come & thank you all again! <3

*Video about HLH.