This is my beloved niece, Emma, and this is her story. She is 15 months, and loves to sing, dance, and laugh. She is the youngest of three. She has two older sisters, who adores her and a huge slew of family members who loves and have been supporting her through her illness.
Emma Vang, born with blond colored hair and very fair skin, which was much-admired to be her most beautiful traits. Though thought to be her ancestry endowment, that’s common in the Hmong ethnicity, these lovely features would turn out to be the vastest trial that Emma would ever have to endure. Along with having to do so at the age of innocence. Emma’s symptoms started in December 2013, when she was only 11 months old. She had a high fever for about three days and was taken to the emergency room immediately after day three. In the ER room, it was discovered that her heart rate shot up to about 200, and fever was about 102. This discovery initiated her transfer to a pediatric facility located an hour away from her home. During that transfer, it was detected that her lymph nodes have swollen up, making it difficult for her to breathe. Upon this discovery, she was then admitted to the ICU unit where she was closely monitored. At this point the Doctors didn't know what was wrong with her, but knew this was more than just a fever. She wasn't responding, her liver functions were decreased, and required blood transfusions one after another. Since she was not responding, Doctors told her parents they would need to do MRI's and CT's to see if there may be something wrong with her brain. When those test turned out normal, doctors decided they needed to perform surgery to remove all the fluid in the back of her throat, to try and bring down all the swelling around her neck so she can breathe normally. Once the surgery was complete, we all waited for the swelling to go down only to be told that the surgery did not do what they had expected. Still swollen and completely unconscious, our little Emma was facing the biggest fight of her life. Three weeks after being admitted and having to undergo test after test, needle pokes one after another, multiple blood transfusions, radiation treatments and a spinal tap, Emma was diagnosed with a genetic disease called Griscelli Syndrome. A rare autosomal recessive disorder (disease that can be passed down through families) characterized by albinism (albino) with immunodeficiency that usually causes death by early childhood.
Emma, however, still has a long road ahead of her, as further examinations have also diagnosed her with the Epstein Barr virus. Her genetic disease is also associated with HLH- hemophagocytic lymphohistiocytosis, a life-threatening condition which when sick, her cells are hyper functioning and doesn't know when to stop. The cells then start to attack her own immune system-which explains why she needed so many blood transfusions. This is a very rare condition and there are not enough cases to provide doctors with a precise cure. The most known reliable cure is a bone marrow transplant. Due to this procedure befalling to a donor, and not immediate family, she risks rejecting the donor's blood. She is scheduled to have the procedure at the end of May. There are still so many risks involved in this procedure, as it will require her to have surgery for a central line placement, spinal tap, bone marrow aspiration and chemotherapy. She will also need to be isolated after the transplant, to try and prevent her from contracting any life threatening viruses which can complicate her recovery. Furthermore, she will be required to stay in isolation for at least 8 weeks, undergoing chemo treatments during her entire stay and be separated from all of her families doting arms. The effects of the chemo will cause her to lose her stunning blond mane and weaken her ability to sing, dance and laugh. She will also be obliged to take medication that will make her tired, moody and very sick to the point where all she’ll do is vomit and will not have the desire to eat. Which will then require her to be fed through a nutrition IV. On top of all these concerns to her health, a fertility doctor had delivered news that due to the toxicity of the chemotherapy she will be receiving, she may never be able to have kids of her own. Her parents had the option of freezing one of her ovaries, but the procedure deemed too risky for her and was more experimental with no guarantees. Her parents had to make the heart wrenching decision of her possibly not having a chance to have children of her own and felt it was in her best interest to battle the transplant first. She has other options when she's ready to undergo fertility treatment if her body was able to savor any of her eggs. A very costly procedure, in which insurance companies will not cover the expenses.
There will be many unforeseen medical expenses that her parents will need assistance with, not to mention the time they will be required to take off work to care for her. As difficult enough as it is with this huge battle ahead of them, my hope is that worrying about their finances is the last thing they will need to think about. Therefore as the aunt of little baby Emma, whom I love with every fiber of my being, I have decided to set up this fund for my sister to help my lovable niece. I know I’ve written a book so far, and some of you probably didn’t even get down this far, but I wanted to share Emma’s entire journey so all can grasp her struggles to stay alive. No parent should ever have to suffer through seeing their baby hang by a life line, so my aspiration is that we can offer some relief for the heart break they suffer each time their baby is yanked from their loving arms for the next go of possible treatments. This is a long term disease that will affect Emma for the rest of her life. It’s beyond anything an innocent child should have to withstand, so your thoughts, prayers and donations are appreciated. Please pray for a safe transplant, and that her doctors will be guided to do what’s needed to bring her safely home. All donations will go to a good cause for Emma and your generosity will be treasured for many lifetimes.