My nephew, Daniel, is five months old and fighting for his life. Baby Daniel is the perfect baby, he hardly cries and laughs with everyone. One night changed his demeanor with a fever that kept coming back. His skin began to turn yellow and signs of jaundice set in. After a couple of doctor’s visits and two emergency rooms, he was sent to Texas Children’s Hospital in downtown Houston where he was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH), a life-threatening immune deficiency disease.
His yellow skin was due to liver failure. His liver was engorged and his stomach was extended. Baby Daniel started in the Pediatric ICU and is now in the Pediatric Care Unit. His labs showed low white blood cells and platelets and high ferritin levels, triglycerides, and liver enzymes. HLH is like cancer and is treated with chemo and steroids. Another treatment option was an experimental antibody from Switzerland. The doctors encouraged the antibody because it would decrease harmful future complications. It took the company seven days to agree to allow the use of the antibody since he may possibly be the youngest patient to be administered it. Maria and Daniel were told that only 30 other people in the world had ever taken this treatment.
There is no timeline for his discharge. The initial protocol of the Novimmune drug was for 16 days of hospitalization with the eventual need for a bone marrow transplant, it will be months before Danny will be able to go home.
In all of this my sister Maria and my brother-in-law Daniel have been there with him every single day. I have seen their pain first hand from the initial diagnosis to the daily doctor updates. My sister and Daniel take turns sleeping in the hospital chairs next to Baby Daniel’s bed. They both remain resilient and do their best to advocate for Baby Daniel to feel as comfortable as possible.
They have seen an outpouring of love and prayers from friends and family. I’ve started this GoFundMe page to help them offset their medical expenses as Baby Daniel continues to be treated at Texas Children’s Hospital. Many of you have reached out wondering how to help them, we hope this will allow you to help
them through continued prayers and financial support. Any contribution is appreciated. At this moment, there is no sight of Baby Daniel’s release.
To learn more about HLH click here.
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