EMBERLYN’S FIGHT AGAINST HLH DISEASEHello everyone! First of all I just want to thank you for at least clicking to this link to read our story it really means a lot to us. Well at the moment we are going through a difficult journey with our loved ones Veronica and her husband Rudy Calderon. They have 3 beautiful daughters and the youngest one Emberlyn Calderon who is 2 years old is in critical condition. She has been diagnosed with HLH disease. HLH stands for hemophagocytic lymphohistiocytosis, (gazoontite! Lets just stick with HLH). HLH is a life- threathening condition. It is often caused by an inherited problem of the immune system, which is called “primary” HLH or “familial” HLH. In patients with primary HLH, cells of the immune system, principally T cells and NK cells, don’t work properly to destroy infected or damaged cells as they should. Because of this the immune system becomes overstimulated and over activated. The immune system then begins to damage the patient’s own tissues and organs, including the bone marrow, the liver, and the brain. Doctors can even sometimes see cells of the immune system eating other cells when they look at the bone marrow from a patient. This is called hemaphagocytosis. Emberlyn has been admitted to the Children’s hospital in El Paso, Tx. She was in ICU two weeks ago and doctors were performing multiple tests to find a diagnosis. Emberlyn went through oncology tests which included a spinal tap and bone marrow biopsy. (lets not forget that she is only 2 years old.) Her liver was inflamed, she had a high fever that was uncontrollable, oxygen level was low and her heart rate was high. Finally the doctors diagnosed her with HLH disease which explains why her liver was inflamed. Emberlyn’s family are heartbroken especially her parents and most all of her 2 big sisters when they heard the bad news. They asked themselves WHY HER? WHAT WENT WRONG? WHY US? LORD PLEASE HELP US. The next couple of days were a roller coaster. Her fever broke but one of her lungs filled up with fluid. This little girl has wires all over her body to help her body get stabled and to puncture another hole to drain out the fluid from her lung? This is AGONY! Oh and let’s not forget about the catheter too. GEEZ. Fluid from her lung was completely drained. SO now comes the fun part. In order to treat HLH, patients are treated with steroids and yes here it comes CHEMO. Emberlyn received her first chemo and it was a waiting game for her parents. (NOT FUN). The next couple of days Emberlyn seemed to be accepting the chemo just how we were hoping and praying for. Emberlyn was coloring the next day she even ate chicken nuggets and chocolate cake. Her 2 big sisters even came to see her since they haven’t seen her for almost a week. Emberlyn was really happy to see her sisters. Family members would stop by to make her smile and give her a wagon ride around the hospital. She loves her wagon rides. =) Today October 22, 2015, unfortunately Emberlyn is back to where she started. Her fever has gone back up, this means her body is trying really hard to fight infections since her immune system is not working. Emberlyn is going to need a bone marrow transplant to help her get better. Not only does she need a bone marrow transplant but she is going to need the best medical treatment since this is such a rare disease. There is only one hospital that specializes HLH disease and its Cincinnati Children’s Hospital. With all this being said we are asking for your help. Any donations to cover medical expenses will be greatly appreciated. Emberlyn’s parents are going to need all the help they can get to get through this difficult time. PLEASE help with however you can even if it’s just a prayer. LETS HELP EMMY GET THE SPECIAL MEDICAL TREATMENT THAT SHE DESERVES. THANK YOU AND GOD BLESS.
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